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Memory making during bereavement care following the death of a child: A survey exploring parental experiences. 儿童死亡后的丧亲护理期间的记忆制造:一项探索父母经历的调查。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-03 DOI: 10.1177/02692163251393565
Taryn L Luitingh, Trisha M Prentice, Jessie Rowe, Leah Rotin, Melissa Heywood, Sidharth Vemuri

Background: Grief experienced by parents following the death of their child is profound and places them at a higher risk of adverse health outcomes. Memory making practices intend to provide families the tools to meaningfully adjust and make sense of a child's death. Although memory making practices are established in end-of-life care, it remains uncertain how memory making interventions are experienced by families during bereavement.

Aim: This study aims to provide evidence-based insights into the memory making experiences of parents during neonatal and paediatric bereavement care.

Design: This is an exploratory descriptive mixed-methodology study using a Melbourne-based cross-sectional electronic-survey.

Setting/participants: Thirty-three bereaved parents participated in this study. All families were known to the Neonatal Intensive Care Unit and/or the Victorian Paediatric Palliative Care Program at The Royal Children's Hospital. This study captures the experiences of bereaved parents whose children died between 1 January 2018 and 31 December 2020.

Results: The majority of parents who took part in memory making activities had a positive experience. Parent responses came together across four themes: (1) Experiential memory making is emotionally challenging but rewarding, (2) Physical memory making keeps the child real and part of the family, (3) Regret over missed opportunities and (4) Catering to individual needs.

Conclusion: Personalised provisions of love and care were dignities parents could warmly reflect back on during their bereavement. Importantly, tailoring memory making practices to the unique needs of the family and the dying child ensures both have their needs acknowledged and met.

背景:父母在孩子死亡后所经历的悲痛是深刻的,并使他们面临更高的不良健康结果风险。记忆制作实践旨在为家庭提供有意义的调整和理解孩子死亡的工具。虽然在临终关怀中建立了记忆制造实践,但仍然不确定在丧亲期间家庭如何经历记忆制造干预。目的:本研究旨在为新生儿和儿科丧亲护理中父母的记忆形成经验提供循证见解。设计:这是一项探索性描述性混合方法研究,采用墨尔本横断面电子调查。情境/参与者:33名丧亲父母参与本研究。所有家庭都认识皇家儿童医院新生儿重症监护病房和/或维多利亚儿科姑息治疗项目。本研究记录了2018年1月1日至2020年12月31日期间子女死亡的丧亲父母的经历。结果:参与记忆活动的大多数家长都有积极的体验。家长们的回答有四个主题:(1)体验记忆在情感上是具有挑战性的,但却是有益的;(2)物理记忆的形成让孩子保持真实,成为家庭的一部分;(3)对错过的机会感到后悔;(4)满足个人需求。结论:个性化的关爱和照顾是父母在丧亲之痛中能够温暖地反思的尊严。重要的是,根据家庭和垂死的孩子的独特需求量身定制记忆制作方法,确保他们的需求得到承认和满足。
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引用次数: 0
Outcomes of patients discharged from a community palliative care service: A retrospective observational study. 社区姑息治疗出院患者的结局:一项回顾性观察研究。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-01 DOI: 10.1177/02692163251393785
Davinia S E Seah, Sanja Lujic, Sungwon Chang, David C Currow, Kathy Eagar

Background: Community Palliative Care Services, a limited resource, helps patients spend as much time at home as possible by managing their symptoms and supporting caregivers in the community.

Aim: To describe the characteristics of patients discharged alive from the Community Palliative Care Services and to determine the outcomes of those discharged alive, including overall survival, subsequent place of death, and health service use.Design, setting/participants:Linked administrative clinical data were analysed for all adults discharged from an Australian metropolitan Community Palliative Care Services in Sydney between July 2010 and September 2018. That data comprised death records, ambulance, emergency, and hospital admissions. Factors associated with 30-day re-presentation to these services after discharge from the Community Palliative Care Services were examined using logistic regression.

Results: Of 5270 community patients, 20% (n = 1095) were alive at discharge. The median follow-up after the first discharge was 259 (95% CI 214-287) days, with 40% (n = 454) of these having a subsequent community palliative care referral. Six hundred and sixty-four (61%) died within a year of discharge, and 45% (n = 495) died in the community. Patients who lived in private residences and who had a malignant disease had higher odds of 30-day hospital re-presentation.

Conclusion: As the demand for Community Palliative Care Services increases, delivering equitable and efficient services to patients with palliative care needs becomes challenging with limited resources. Factors associated with hospital readmission shortly after discharge from the Community Palliative Care Services should be further explored to determine interventions that may support patients and families in their illness trajectory.

背景:社区姑息治疗服务是一种有限的资源,通过管理患者的症状和支持社区的护理人员,帮助患者尽可能多地呆在家里。目的:描述从社区姑息治疗服务中活着出院的患者的特征,并确定那些活着出院的患者的结局,包括总生存率、随后的死亡地点和卫生服务使用情况。设计、环境/参与者:分析了2010年7月至2018年9月期间从悉尼澳大利亚大都市社区临终关怀服务中心出院的所有成年人的相关行政临床数据。这些数据包括死亡记录、救护车、急诊和住院记录。从社区姑息治疗服务出院后30天再到这些服务的相关因素使用逻辑回归进行检查。结果:5270例社区患者中,20% (n = 1095)出院时存活。首次出院后的中位随访时间为259天(95% CI 214-287),其中40% (n = 454)患者随后转诊到社区姑息治疗。664例(61%)在出院后一年内死亡,45% (n = 495)在社区死亡。住在私人住宅和患有恶性疾病的患者在30天内再次住院的几率更高。结论:随着对社区姑息治疗服务需求的增加,在资源有限的情况下,为有姑息治疗需求的患者提供公平高效的服务变得具有挑战性。从社区姑息治疗服务出院后不久再入院的相关因素应进一步探讨,以确定可能支持患者及其家属疾病轨迹的干预措施。
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引用次数: 0
Psilocybin-assisted therapy for individuals with palliative care needs: A systematic review of safety and efficacy. 对有姑息治疗需要的个体进行裸盖菇碱辅助治疗:安全性和有效性的系统评价。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-18 DOI: 10.1177/02692163251383335
Ana Rita Sousa Matos, Ana Catarina Silva, Licínio Rego, Rui Fernandes, Sara Gonçalves

Background: Palliative Care is concerned with relieving suffering and improving the quality of life of patients and their families. Currently, questions arise about how to provide patients with good end-of-life care. There has been increasing interest in the beneficial effects of using psilocybin-assisted therapy in patients with severe chronic illnesses near the end of their lives and who present symptoms of depression and/or anxiety.

Aim: Explore the role of psilocybin-assisted therapy in palliative care, synthesizing evidence from clinical trials and longitudinal studies.

Design: Systematic review.

Data sources: A bibliographic search was performed in April 2024 in B-on, PubMed, Web of Science, and Scopus. Eligible studies included peer-reviewed quantitative research (RCTs, longitudinal, and observational designs) with adult participants in palliative care settings, examining the efficacy and safety of psilocybin-assisted therapy. Reviews, gray literature, and studies outside the scope of palliative care were excluded.

Results: Of the 215 articles found, six studies (n = 74 participants; age range 22-75 years) met the inclusion criteria. Across randomized and open-label trials, psilocybin-assisted therapy produced clinically significant reductions in depression and anxiety, with 57-79% of participants achieving ⩾ 50% symptom reduction on standardized scales (e.g. HAM-D, HAM-A, BDI, STAI). Improvements were sustained for up to 6-8 months in most trials, and in one follow-up study, for up to 4.5 years. Reported adverse effects were generally mild and transient, including nausea, vomiting, and temporary increases in blood pressure and heart rate; no serious adverse events were observed.

Conclusions: Psilocybin-assisted therapy consistently demonstrated efficacy and safety in the reduction of depressive and anxiety symptoms. However, more studies exploring integrating psilocybin-assisted therapy into existing palliative care healthcare systems are needed. This includes investigating the feasibility, acceptability, and cost-effectiveness of integrating psilocybin-assisted therapy into routine clinical practice.

背景:姑息治疗关注的是减轻痛苦和改善患者及其家属的生活质量。目前,关于如何为病人提供良好的临终关怀的问题出现了。对于使用裸盖菇素辅助疗法治疗临近生命末期的严重慢性疾病患者和出现抑郁和/或焦虑症状的患者的有益效果,人们越来越感兴趣。目的:综合临床试验和纵向研究的证据,探讨裸盖菇素辅助治疗在姑息治疗中的作用。设计:系统回顾。数据来源:于2024年4月在B-on、PubMed、Web of Science和Scopus中进行了书目检索。符合条件的研究包括同行评议的定量研究(随机对照试验、纵向和观察设计),在姑息治疗环境中对成年参与者进行研究,检查裸盖菇素辅助治疗的有效性和安全性。综述、灰色文献和姑息治疗范围之外的研究被排除在外。结果:在215篇文章中,6项研究(n = 74名受试者,年龄22-75岁)符合纳入标准。在随机和开放标签试验中,裸盖草碱辅助治疗在抑郁和焦虑方面产生了临床显着减少,57-79%的参与者在标准化量表(例如HAM-D, HAM-A, BDI, STAI)上达到了小于50%的症状减少。在大多数试验中,改善持续了6-8个月,在一项随访研究中,改善持续了4.5年。报告的不良反应通常是轻微和短暂的,包括恶心、呕吐、血压和心率暂时升高;未观察到严重不良事件。结论:裸盖菇素辅助治疗在减轻抑郁和焦虑症状方面一贯表现出有效性和安全性。然而,需要更多的研究来探索将裸盖菇素辅助疗法整合到现有的姑息医疗保健系统中。这包括调查将裸盖菇素辅助治疗纳入常规临床实践的可行性、可接受性和成本效益。
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引用次数: 0
PRiSM project: e-Delphi study on the role of specialist palliative care services in the care of people living beyond cancer. PRiSM项目:关于专科姑息治疗服务在癌症患者护理中的作用的e-Delphi研究。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-10-22 DOI: 10.1177/02692163251376957
Amy Taylor, Andrew Davies

Background: Specialist palliative care provides holistic care for individuals with health-related suffering and those close to them. Historically this included people with advanced cancer, however, people living beyond cancer also have significant unmet needs. Specialist palliative care could potentially provide support, but evidence for their role is limited.

Aim: To generate consensus opinion among European experts about the role of specialist palliative care for people living beyond cancer.

Design: The PRiSM project (Specialist Palliative care's Role in Cancer Survivorship Model) was an electronic Delphi study. Participants provided anonymous feedback on statements across three rounds. Consensus was pre-defined as ⩾75% within each group. Spearman's Rank Order Correlation determined stability and the Chi square test for goodness of fit compared group outcomes.

Setting/participants: European professional experts and patient advocates were invited via email, forming two groups undertaking simultaneous processes: specialist palliative care (86 experts representing 19 countries/regions) and oncology (54 experts representing 17 countries/regions).

Results: Eighty specialist palliative care and 49 oncology experts completed the process. Outcomes were achieved about the general core functions of specialist palliative care and areas requiring education, and their potential role for people living beyond cancer. Sixty statements reached stable consensus in both groups. Comparing other outcomes, 16 statements reached consensus in only one group, nine with a significant difference.

Conclusions: European specialist palliative care and oncology experts reached consensus that specialist palliative care should have a role in supporting people living beyond cancer, specifically in pain management. Results will inform a new care model.

背景:专科姑息治疗提供个人与健康相关的痛苦和那些接近他们的整体护理。从历史上看,这包括晚期癌症患者,然而,癌症以外的人也有大量未满足的需求。专科姑息治疗可能提供潜在的支持,但其作用的证据有限。目的:在欧洲专家中就专科姑息治疗对癌症患者的作用达成共识。设计:PRiSM项目(专科姑息治疗在癌症生存模型中的作用)是一项电子德尔菲研究。参与者对三轮陈述提供了匿名反馈。共识在每个组内被预先定义为大于或等于75%。Spearman秩序相关决定稳定性,卡方检验检验拟合优度比较各组结果。环境/参与者:通过电子邮件邀请欧洲专业专家和患者倡导者,组成两组同时进行进程:专家姑息治疗(86名专家代表19个国家/地区)和肿瘤学(54名专家代表17个国家/地区)。结果:80名姑息治疗专家和49名肿瘤学专家完成了整个过程。结果是关于专家姑息治疗的一般核心功能和需要教育的领域,以及它们对癌症以外的人的潜在作用。两组有60条意见达成了稳定的共识。与其他结果相比,只有一组的16项陈述达成了共识,其中9项有显著差异。结论:欧洲专家姑息治疗和肿瘤学专家达成共识,专家姑息治疗应该在支持癌症患者生活方面发挥作用,特别是在疼痛管理方面。结果将为新的护理模式提供信息。
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引用次数: 0
Burnout and psychosocial working environment in specialised palliative care: A cross-sectional study of a multiprofessional cohort. 专业姑息治疗中的职业倦怠和社会心理工作环境:一项多专业队列的横断面研究。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-26 DOI: 10.1177/02692163251395559
Jonas Kassow Gronlund, Cecilie Markvard Møller, Kirstine Bøndergaard, Mette Asbjoern Neergaard

Background: Specialised palliative care providers face complex challenges when caring for patients with life-limiting diseases. Despite this, a low prevalence of burnout has been observed among physicians in Danish palliative care compared to other Western countries. Given the multidisciplinary nature of palliative care, an expanded investigation was warranted.

Aim: To assess burnout and its associations with demographic variables and workplace factors among all professions in Danish palliative care.

Design: Cross-sectional survey study using the Copenhagen Burnout Inventory, the Danish Psychosocial Work Environment Questionnaire, and the Warr-Cook-Wall Job Satisfaction Scale.

Participants: All 12 palliative care units in the Central Denmark Region participated. Of 288 invited professionals, 151 (52%) completed the survey. Respondents comprised nurses (n = 88), physicians (n = 17), other healthcare specialists (n = 12), and non-healthcare professionals (n = 34) from six hospices and six palliative care teams.

Results: The prevalence of burnout was 23% overall; 28% in hospices and 14% in palliative care teams. Professionals in palliative care teams reported more weekly working hours (38 vs 34, p < 0.001), less shift work (40% vs 73%, p < 0.001), and higher meaningfulness at work (85 vs 76, p < 0.001) compared to hospice professionals. Adjusted analyses showed higher burnout among respondents with young age (p = 0.01), children living at home (p = 0.02), and shift work (p < 0.03). Low burnout was associated with high meaningfulness at work (p < 0.001), collegial trust (p < 0.001), and job satisfaction (p < 0.001).

Conclusion: Burnout is a relevant concern in Danish palliative care, especially at hospices. The identified links to organisational and psychosocial factors suggests areas for further research and organisational attention.

背景:专业姑息治疗提供者在照顾限制生命的疾病患者时面临复杂的挑战。尽管如此,与其他西方国家相比,在丹麦姑息治疗的医生中,倦怠的患病率较低。鉴于姑息治疗的多学科性质,扩大调查是必要的。目的:评估丹麦姑息治疗中所有职业的职业倦怠及其与人口学变量和工作场所因素的关系。设计:采用哥本哈根职业倦怠量表、丹麦社会心理工作环境问卷和Warr-Cook-Wall工作满意度量表进行横断面调查研究。参与者:丹麦中部地区所有12个姑息治疗单位参与了研究。在288名被邀请的专业人士中,151名(52%)完成了调查。受访者包括护士(n = 88)、医生(n = 17)、其他医疗保健专家(n = 12)和来自6个临终关怀医院和6个姑息治疗团队的非医疗保健专业人员(n = 34)。结果:总倦怠率为23%;28%在临终关怀医院,14%在姑息治疗团队。与安宁疗护专业人员相比,缓和疗护团队的专业人员报告每周工作时间更多(38比34,p p p < 0.001)。调整分析显示,年龄小(p = 0.01)、儿童在家生活(p = 0.02)和轮班工作(p p p p)的受访者倦怠程度较高。结论:丹麦姑息治疗中,尤其是临终关怀中,倦怠是一个相关问题。已确定的与组织和社会心理因素的联系表明了进一步研究和组织关注的领域。
{"title":"Burnout and psychosocial working environment in specialised palliative care: A cross-sectional study of a multiprofessional cohort.","authors":"Jonas Kassow Gronlund, Cecilie Markvard Møller, Kirstine Bøndergaard, Mette Asbjoern Neergaard","doi":"10.1177/02692163251395559","DOIUrl":"10.1177/02692163251395559","url":null,"abstract":"<p><strong>Background: </strong>Specialised palliative care providers face complex challenges when caring for patients with life-limiting diseases. Despite this, a low prevalence of burnout has been observed among physicians in Danish palliative care compared to other Western countries. Given the multidisciplinary nature of palliative care, an expanded investigation was warranted.</p><p><strong>Aim: </strong>To assess burnout and its associations with demographic variables and workplace factors among all professions in Danish palliative care.</p><p><strong>Design: </strong>Cross-sectional survey study using the Copenhagen Burnout Inventory, the Danish Psychosocial Work Environment Questionnaire, and the Warr-Cook-Wall Job Satisfaction Scale.</p><p><strong>Participants: </strong>All 12 palliative care units in the Central Denmark Region participated. Of 288 invited professionals, 151 (52%) completed the survey. Respondents comprised nurses (<i>n</i> = 88), physicians (<i>n</i> = 17), other healthcare specialists (<i>n</i> = 12), and non-healthcare professionals (<i>n</i> = 34) from six hospices and six palliative care teams.</p><p><strong>Results: </strong>The prevalence of burnout was 23% overall; 28% in hospices and 14% in palliative care teams. Professionals in palliative care teams reported more weekly working hours (38 vs 34, <i>p</i> < 0.001), less shift work (40% vs 73%, <i>p</i> < 0.001), and higher meaningfulness at work (85 vs 76, <i>p</i> < 0.001) compared to hospice professionals. Adjusted analyses showed higher burnout among respondents with young age (<i>p</i> = 0.01), children living at home (<i>p</i> = 0.02), and shift work (<i>p</i> < 0.03). Low burnout was associated with high meaningfulness at work (<i>p</i> < 0.001), collegial trust (<i>p</i> < 0.001), and job satisfaction (<i>p</i> < 0.001).</p><p><strong>Conclusion: </strong>Burnout is a relevant concern in Danish palliative care, especially at hospices. The identified links to organisational and psychosocial factors suggests areas for further research and organisational attention.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"132-142"},"PeriodicalIF":3.9,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145834445","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Opening the black box: Understanding the editorial and peer review journey of a manuscript. 打开黑盒子:了解稿件的编辑和同行评审之旅。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-20 DOI: 10.1177/02692163251406788
Catherine Walshe, Debbie Ashby
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引用次数: 0
"One must know things, but above all, one must know how to be": an existential-phenomenological study of professional identity in palliative care. “一个人必须知道事物,但最重要的是,一个人必须知道如何成为”:姑息治疗中职业认同的存在现象学研究。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-11-06 DOI: 10.1177/02692163251385888
Mateus Eduardo Romão, Ilaria Setti, Michela Monaci, Elena Cavallari, Serena Barello

Background: Palliative care-while overlapping with but distinct from end-of-life care-involves multidisciplinary teams providing medical, psychosocial, and existential support to patients and families facing serious illness. While prior research has examined professional identity in palliative care, the existential dimensions of identity formation-what it means to be a palliative care professional-remain largely underexplored.

Aim: To explore the lived experiences of palliative care professionals, focussing on how their professional identity is constructed through the existential notion of "being," and to identify implications for advancing international education and workforce policy.

Design: Semi-structured interviews were analysed using Interpretative Phenomenological Analysis (IPA). Reflexivity, peer debriefing, thick description, and an audit trail were applied to ensure rigour and transparency.

Setting/participants: Fourteen Italian palliative care professionals from diverse disciplines (nursing, medicine, allied health) working primarily in community-based services.

Results: One Group Existential Theme emerged: Being, encompassing four subthemes-Meaning of Being, Ways of Being, Being Present for Others, and Reasons for Being Present. Across these, participants framed their identity not only around technical competence but also around emotional presence, relational depth, and ethical commitment to dignity in dying.

Conclusions: This study advances existing literature by integrating the existential dimensions of "being" into professional identity theory. Findings highlight the need for international education and workforce strategies that embed reflective practice, emotional competence training, and peer-support structures alongside technical instruction, to sustain professionals in death-related work.

背景:姑息治疗虽然与临终关怀重叠但又不同,它涉及多学科团队,为面临严重疾病的患者和家庭提供医疗、心理社会和生存支持。虽然之前的研究已经考察了缓和医疗中的职业身份,但身份形成的存在性维度——成为一名缓和医疗专业人员意味着什么——在很大程度上仍未得到充分探索。目的:探讨姑息治疗专业人员的生活经历,重点关注他们的职业身份是如何通过“存在”的存在概念构建的,并确定对推进国际教育和劳动力政策的影响。设计:采用解释现象学分析(IPA)对半结构化访谈进行分析。反身性、同行汇报、详细描述和审计跟踪被应用于确保严谨性和透明度。环境/参与者:来自不同学科(护理、医学、联合保健)的14名意大利姑息治疗专业人员,主要从事社区服务。结果:出现了一组存在主义主题:存在,包括四个子主题:存在的意义、存在的方式、为他人而存在和存在的理由。在这些研究中,参与者不仅围绕技术能力,还围绕情感存在、关系深度和对死亡尊严的道德承诺来构建自己的身份。结论:本研究通过将“存在”的存在维度整合到职业认同理论中,对已有文献进行了推进。研究结果强调需要国际教育和劳动力战略,将反思实践、情感能力培训和同伴支持结构与技术指导结合起来,以维持专业人员从事与死亡有关的工作。
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引用次数: 0
'Adrift in a sea of just absolute unknowableness': A multimethod qualitative study exploring patient, carer and healthcare professional experiences of communicating about future uncertainty in multimorbidity. “在绝对不可知的海洋中漂流”:一项多方法定性研究,探索患者,护理人员和医疗保健专业人员在多重疾病中沟通未来不确定性的经验。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-01 DOI: 10.1177/02692163251393586
Rosanna Fennessy, Anna Spathis, Stephen Barclay, Simon Noah Etkind

Background: Uncertainty about the future is commonly experienced by older adults with advanced multimorbidity, impacting multiple life domains and frequently causing anxiety. Communicating about future uncertainty affects patient satisfaction, quality of decision-making and opportunities for future planning. Patient, carer and healthcare professional experiences of future uncertainty communication have been little studied to date.

Aim: In the context of older adults with advanced multimorbidity, to explore patient, carer and healthcare professional experiences and preferences for communication of uncertainty about their future.

Design: Multi-method qualitative research utilising in-depth interviews and focus groups with reflexive thematic analysis.

Setting/participants: Older adults with advanced multimorbidity (n = 15), their nominated informal carers (n = 3), and community and inpatient healthcare professionals working with this population (n = 17).

Results: Participants' experiences of uncertainty communication were influenced by their acceptance or avoidance of addressing future unknowns. Patients and their informal carers expressed a range of information needs: they prioritised open and honest dialogue with healthcare professionals, tailored to their unique circumstances and supported by reassurance and proactive plans, even when medical options were limited. Healthcare professionals acknowledged the importance of addressing uncertainty: they expressed a lack of experience and confidence and feared upsetting patients or losing their trust. As a result, opportunities for timely and personalised communications may be missed.

Conclusions: To support patients and carers navigate the inherent uncertainties of advanced multimorbidity, healthcare professionals would benefit from tailored communication training designed to increase their experience of undertaking honest and open dialogue about future uncertainties, informed by patients' individual context and preferences.

背景:对未来的不确定性是患有晚期多重疾病的老年人普遍经历的,影响多个生活领域并经常引起焦虑。沟通未来的不确定性会影响患者满意度、决策质量和未来规划的机会。迄今为止,患者、护理人员和医疗保健专业人员对未来不确定性沟通的研究很少。目的:在患有晚期多重疾病的老年人的背景下,探讨患者、护理人员和医疗保健专业人员的经验和对他们未来不确定性的沟通偏好。设计:多方法定性研究利用深度访谈和焦点小组反身性专题分析。环境/参与者:患有晚期多重疾病的老年人(n = 15),他们指定的非正式照顾者(n = 3),以及与这些人群一起工作的社区和住院医疗保健专业人员(n = 17)。结果:参与者的不确定性沟通体验受到他们对未来未知的接受或回避的影响。患者及其非正式护理人员表达了一系列信息需求:他们优先考虑与保健专业人员进行公开和诚实的对话,根据他们的独特情况量身定制,并得到保证和积极计划的支持,即使在医疗选择有限的情况下。医疗保健专业人员承认解决不确定性的重要性:他们表示缺乏经验和信心,担心让患者感到不安或失去他们的信任。因此,可能会错过及时和个性化沟通的机会。结论:为了支持患者和护理人员应对晚期多重疾病固有的不确定性,医疗保健专业人员将受益于量身定制的沟通培训,这些培训旨在增加他们对未来不确定性进行诚实和开放对话的经验,并根据患者的个人情况和偏好进行对话。
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引用次数: 0
Prevalence, risk factors and management of pressure injuries and their implications for palliative care: A rapid overview of reviews. 压力损伤的患病率、危险因素和管理及其对姑息治疗的影响:综述综述
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-11-26 DOI: 10.1177/02692163251393817
Omar Dewidar, Hind Sabri, Elizabeth Ghogomu, Shweta Jaitly, Marie-Claude Legacy, Shirley H Bush, Jill Rice, Vivian Welch

Introduction: Evidence around pressure injuries in palliative care settings is limited and fragmented.

Aim: To synthesize systematic review evidence regarding prevalence, risk factors, prevention and treatment of pressure injuries in non-acute care settings, and evaluate implications for specialist palliative care.

Design: A rapid overview of reviews following the Cochrane guidance for overviews.

Data sources: We searched four databases (MEDLINE, Cochrane Database of Systematic Reviews, JBI EBM Reviews, and CINAHL) from inception to October 2024. We included systematic reviews on adult patients in inpatient Palliative Care Units or settings likely involving end-of-life care.

Results: Seventeen systematic reviews incorporating 149 unique studies (n = 5,856,293) were included. Thirteen of the reviews were high quality. Only one low-quality review specifically addressed palliative care, focusing on prevalence and risk factors. Interventions were categorized into nutritional, physical (e.g. repositioning, tilt strategies), topical/dressing-based, electrical stimulation and organizational approaches. Frequent repositioning and certain nutritional interventions may reduce incidence or surface area of pressure ulcers; however, certainty remains very low. Frequent repositioning, specific tilt strategies and specific nutritional interventions may help reduce the incidence of pressure injuries and decrease injury surface area; however certainty is very low. Other interventions have limited and inconclusive evidence and were rated low to very low certainty according to GRADE criteria due to poor trial design and population and setting variations.

Conclusions: The evidence base remains weak and largely indirect, offering insufficient guidance for clinical practice in palliative care. High-quality, targeted research is needed to inform effective pressure injury prevention and management in this population.

在姑息治疗环境中,关于压力损伤的证据是有限和分散的。目的:综合有关非急性护理环境中压伤的患病率、危险因素、预防和治疗的系统综述证据,并评估专科姑息治疗的意义。设计:根据Cochrane综述指南对综述进行快速综述。数据来源:我们检索了四个数据库(MEDLINE, Cochrane系统评论数据库,JBI EBM评论和CINAHL),从成立到2024年10月。我们纳入了对住院姑息治疗单位或可能涉及临终关怀的环境中的成年患者的系统评价。结果:纳入17项系统综述,纳入149项独特研究(n = 5,856,293)。其中13篇评论是高质量的。只有一篇低质量的综述专门讨论了姑息治疗,关注的是患病率和风险因素。干预措施分为营养、物理(如重新定位、倾斜策略)、局部/敷料、电刺激和组织方法。经常重新定位和某些营养干预可以减少压疮的发生率或表面面积;然而,确定性仍然很低。频繁的重新定位,特定的倾斜策略和特定的营养干预可能有助于减少压力损伤的发生率和减少损伤表面积;然而,确定性非常低。其他干预措施的证据有限且不确定,由于试验设计不佳、人群和环境变化,根据GRADE标准,其确定性被评为低至极低。结论:证据基础薄弱且主要是间接的,对姑息治疗的临床实践指导不足。需要高质量、有针对性的研究来告知这一人群有效的压力性损伤预防和管理。
{"title":"Prevalence, risk factors and management of pressure injuries and their implications for palliative care: A rapid overview of reviews.","authors":"Omar Dewidar, Hind Sabri, Elizabeth Ghogomu, Shweta Jaitly, Marie-Claude Legacy, Shirley H Bush, Jill Rice, Vivian Welch","doi":"10.1177/02692163251393817","DOIUrl":"10.1177/02692163251393817","url":null,"abstract":"<p><strong>Introduction: </strong>Evidence around pressure injuries in palliative care settings is limited and fragmented.</p><p><strong>Aim: </strong>To synthesize systematic review evidence regarding prevalence, risk factors, prevention and treatment of pressure injuries in non-acute care settings, and evaluate implications for specialist palliative care.</p><p><strong>Design: </strong>A rapid overview of reviews following the Cochrane guidance for overviews.</p><p><strong>Data sources: </strong>We searched four databases (MEDLINE, Cochrane Database of Systematic Reviews, JBI EBM Reviews, and CINAHL) from inception to October 2024. We included systematic reviews on adult patients in inpatient Palliative Care Units or settings likely involving end-of-life care.</p><p><strong>Results: </strong>Seventeen systematic reviews incorporating 149 unique studies (<i>n</i> = 5,856,293) were included. Thirteen of the reviews were high quality. Only one low-quality review specifically addressed palliative care, focusing on prevalence and risk factors. Interventions were categorized into nutritional, physical (e.g. repositioning, tilt strategies), topical/dressing-based, electrical stimulation and organizational approaches. Frequent repositioning and certain nutritional interventions may reduce incidence or surface area of pressure ulcers; however, certainty remains very low. Frequent repositioning, specific tilt strategies and specific nutritional interventions may help reduce the incidence of pressure injuries and decrease injury surface area; however certainty is very low. Other interventions have limited and inconclusive evidence and were rated low to very low certainty according to GRADE criteria due to poor trial design and population and setting variations.</p><p><strong>Conclusions: </strong>The evidence base remains weak and largely indirect, offering insufficient guidance for clinical practice in palliative care. High-quality, targeted research is needed to inform effective pressure injury prevention and management in this population.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"21-30"},"PeriodicalIF":3.9,"publicationDate":"2026-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12779764/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145637438","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Decision-making regarding anticoagulant therapy in the last phase of life: In-depth interview study with healthcare professionals (the OPTIMA trial). 关于生命最后阶段抗凝治疗的决策:与医疗保健专业人员的深度访谈研究(OPTIMA试验)。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-11-26 DOI: 10.1177/02692163251394875
Marte A M van Hylckama Vlieg, Karlijn J I de Beukelaar, Romy H L Spreeuw, Marieke J H A Kruip, P Hugo M van der Kuy, Agnes van der Heide, Carin C D van der Rijt, Eric C T Geijteman

Background: Many patients in the last phase of life use anticoagulants. There is little evidence on the benefits and risks of (dis)continuation of anticoagulant therapy in this phase, leaving healthcare professionals with a complex clinical dilemma.

Aim: To gain an in-depth understanding of the experiences, perspectives, and preferences of healthcare professionals regarding decision-making about anticoagulant therapy in the last phase of life.

Design: Semi-structured in-depth interviews were conducted and analyzed using a thematic content analysis.

Setting/participants: This study was performed in the Dutch Federation of Anticoagulation Clinics, two hospitals, two hospices, and two palliative home care groups in the Netherlands. Thirty-two healthcare professionals regularly involved in care for patients in the last phase of life were interviewed.

Results: Healthcare professionals experienced decision-making regarding anticoagulant therapy in the last phase of life as difficult and multifactorial, due to a lack of knowledge on the incidence of events after (dis)continuing therapy, the uncertain risk trade-off between events with major consequences, the variety of indications for therapy, the variety of comorbidities and patient characteristics, and prognostic uncertainty. As a result, healthcare professionals act defensively when considering discontinuation, due to concerns about being held accountable for potential thrombotic events. Uncertainty in decision-making results in reactive decision-making in response to triggers such as active bleeding, low performance score, recognition of the dying phase, and patient's preference.

Conclusions: This study highlighted the complexity of decision-making regarding anticoagulant therapy in the last phase of life. This results, in practice, in reactive instead of proactive decision-making.

背景:许多患者在生命的最后阶段使用抗凝剂。在这一阶段,几乎没有证据表明抗凝治疗的益处和风险(不)继续,使医疗保健专业人员面临复杂的临床困境。目的:深入了解医疗保健专业人员在生命最后阶段关于抗凝治疗决策的经验、观点和偏好。设计:采用半结构化的深度访谈,并采用主题内容分析法进行分析。环境/参与者:本研究在荷兰抗凝诊所联合会、两家医院、两家临终关怀医院和两家姑息治疗家庭护理小组中进行。对32名经常参与病人生命最后阶段护理的保健专业人员进行了访谈。结果:医疗保健专业人员对生命最后阶段抗凝治疗的决策是困难和多因素的,因为缺乏对(停止)继续治疗后事件发生率的了解,具有主要后果的事件之间不确定的风险权衡,治疗适应症的多样性,合并症和患者特征的多样性,以及预后的不确定性。因此,由于担心对潜在的血栓事件负责,医疗保健专业人员在考虑停药时采取防御措施。决策的不确定性导致对诸如活动性出血、低绩效评分、对死亡阶段的认识和患者偏好等触发因素的反应性决策。结论:本研究强调了生命最后阶段抗凝治疗决策的复杂性。在实践中,这导致了被动决策而不是主动决策。
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引用次数: 0
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Palliative Medicine
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