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How well supported are employees with terminal illness in the workplace? A snapshot of evidence from the Higher Education sector. 身患绝症的员工在工作场所得到了怎样的支持?高等教育部门的证据快照。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-11-08 DOI: 10.1177/02692163251393584
Rehaan Husain, Joanne Smithson, India Tunnard, Michele Rose, Rachel Suff, Izzie Baverstock-Poppy, Sabrina Bajwah, Joanna M Davies
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引用次数: 0
'Saying goodbye'. . . A systematic integrative review of palliative caregiving in intergenerational living contexts. “说再见”……代际生活环境中姑息治疗的系统综合综述。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2026-01-01 Epub Date: 2025-12-01 DOI: 10.1177/02692163251394880
Madeleine L Juhrmann, Priyanka Vandersman, Raechel A Damarell, Ahmed Khamis Sharaf, Aljon San Martin, Andrew Donkor, Yakubu Salifu

Background: Intergenerational co-residence has historically been prevalent. Recent financial pressures, increasing caregiving responsibilities and ageing populations have led to a resurgence of this arrangement, particularly in end-of-life care. However, understanding of its influence on care quality across cultures remains limited.

Aim: To explore how intergenerational co-residence affects emotional, practical, and cultural dimensions of palliative and end-of-life care across different settings, and to identify key themes shaping caregiving roles, decision-making, and support needs in these households.

Design: Systematic integrative review and thematic synthesis based on Braun and Clarke's approach and using the Convoy Model as a theoretical framework.

Prospero id: CRD42023446688.

Data sources: Six major databases were searched from inception to 22 May 2023 and updated to 8 June 2025. Eligible papers reported empirical studies on end-of-life care in intergenerational co-residence and were appraised using the Mixed Methods Appraisal Tool.

Results: Three themes were constructed from seven studies from China, South Africa, Spain, Uganda, Turkey and the United States. These were: responding to an end-of-life diagnosis, with limited death literacy delaying care; identifying systems of support, where caregiving burdens often fell on women; and concluding the journey and saying goodbye.

Conclusions: Intergenerational co-residence can foster support at the end of life, yet it may also reinforce gendered caregiving roles that disproportionately burden women. Effective integration of formal support services with family caregiving remains important in alleviating pressures and promoting equitable care models, highlighting the need for culturally sensitive interventions that address the diverse needs of families, while encouraging collaborative caregiving approaches.

背景:代际共住在历史上很普遍。最近的财政压力、照料责任的增加和人口老龄化导致这种安排的复苏,特别是在临终关怀方面。然而,了解其对跨文化护理质量的影响仍然有限。目的:探讨代际共同居住如何影响不同环境下姑息治疗和临终关怀的情感、实践和文化维度,并确定这些家庭中塑造护理角色、决策和支持需求的关键主题。设计:以Braun和Clarke的方法为基础,以护航模型为理论框架,进行系统的综合评价和专题综合。普洛斯彼罗id: CRD42023446688。数据来源:从建立到2023年5月22日检索了六个主要数据库,并更新到2025年6月8日。符合条件的论文报告了代际共同居住的临终关怀的实证研究,并使用混合方法评估工具进行评估。结果:从中国、南非、西班牙、乌干达、土耳其和美国的7项研究中构建了3个主题。这些是:对临终诊断做出反应,有限的死亡知识延迟了护理;确定照顾负担往往落在妇女身上的支助系统;结束旅程,说再见。结论:代际共同居住可以在生命结束时促进支持,但它也可能强化性别照顾角色,这对妇女造成了不成比例的负担。将正式支助服务与家庭照护有效结合起来,对于减轻压力和促进公平的照护模式仍然很重要,强调需要采取具有文化敏感性的干预措施,解决家庭的各种需求,同时鼓励合作照护方法。
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引用次数: 0
Effectiveness of and implementation requirements for telehealth in palliative care patients with advanced cancer: A systematic review and meta-analysis. 晚期癌症姑息治疗患者远程医疗的有效性和实施要求:系统回顾和荟萃分析。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-30 DOI: 10.1177/02692163251403395
Arisa Kawashima, Taiji Noguchi, Taiki Furukawa, Akiko Unesoko, Shintaro Togashi, Kazuki Sato

Background: Telehealth is being integrated with palliative care for patients with advanced cancer to improve access to specialized palliative care. However, its effectiveness and implementation requirements in palliative care remain unclear.

Aim: This study evaluates the effectiveness of and implementation requirements for telehealth in palliative care patients with advanced cancer.

Design: This was designed as a systematic review and meta-analysis with narrative synthesis (registered; CRD42024581786). The effects on patients' quality of life, symptom burden, and depression were analyzed using a random-effects meta-analysis of randomized controlled trials. A narrative synthesis was conducted for all included studies.

Data sources: MEDLINE, Embase, and Cochrane Library databases were searched in September 2025. Eligible studies comprised controlled trials, observational studies, and qualitative studies involving adults with advanced cancer who received telehealth in palliative care.

Results: Of the 4232 records screened, 42 met the inclusion criteria, and six were eligible for meta-analysis. Telehealth interventions primarily involved videoconferencing, telephone, or text-based communication. Telehealth in palliative care demonstrated significant improvement in quality of life (standardized mean difference: 0.81; 95% CI: 0.09-1.53) and reduction in symptom burden (standardized mean difference: -1.44; 95% CI: -2.24 to -0.65) but had no significant effects on depression. Implementation requirements included trained multiprofessional teams, accessible digital infrastructure, sustainable reimbursement mechanisms, and standardized outcome measurements.

Conclusions: Telehealth in palliative care may help improve quality of life and alleviate symptom burden among patients with advanced cancer. Future research should identify optimal delivery models and examine equity-related barriers to support wider implementation and policy development.

背景:远程医疗正在与晚期癌症患者的姑息治疗相结合,以改善获得专业姑息治疗的机会。然而,其在姑息治疗中的有效性和实施要求仍不清楚。目的:评估晚期癌症姑息治疗患者远程医疗的有效性和实施要求。设计:本研究采用叙述性综合的系统评价和荟萃分析(注册号:CRD42024581786)。使用随机对照试验的随机效应荟萃分析分析对患者生活质量、症状负担和抑郁的影响。对所有纳入的研究进行叙事综合。数据来源:MEDLINE、Embase和Cochrane图书馆数据库于2025年9月检索。符合条件的研究包括对照试验、观察性研究和定性研究,涉及接受远程医疗姑息治疗的晚期癌症患者。结果:在筛选的4232条记录中,42条符合纳入标准,6条符合meta分析的条件。远程医疗干预主要包括视频会议、电话或基于文本的通信。姑息治疗中的远程医疗显示了生活质量的显著改善(标准化平均差值:0.81;95% CI: 0.09-1.53)和症状负担的减轻(标准化平均差值:-1.44;95% CI: -2.24至-0.65),但对抑郁症没有显著影响。实施要求包括训练有素的多专业团队、可访问的数字基础设施、可持续的报销机制和标准化的结果测量。结论:姑息治疗中的远程医疗有助于改善晚期癌症患者的生活质量和减轻症状负担。未来的研究应确定最佳交付模式,并检查与公平有关的障碍,以支持更广泛的实施和政策制定。
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引用次数: 0
How and in what circumstances does facilitation work for residential aged care staff in the implementation of palliative care interventions? A realist review. 如何以及在什么情况下,协助安老院舍人员实施姑息治疗干预措施?现实主义的评论。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-28 DOI: 10.1177/02692163251400110
Kayla Lock, Lysha Zhi Yan Lee, Anita Goh, Katrin Gerber, Wen Kwang Lim, Joanne Tropea, Brad Astbury

Background: The challenges of implementing evidence-based palliative care in residential aged care are widely acknowledged. Facilitation is often cited as an effective implementation strategy to address these challenges. However, there is limited guidance on how this strategy applies specifically to this context.

Aim: To understand the contextual factors and causal processes (mechanisms) that influence the facilitation of interventions designed to improve palliative care in residential aged care, and to develop a realist programme theory that explains how best to support their implementation.

Design: Realist review guided by the RAMESES standards. Protocol is registered on PROSPERO (CRD42023447043).

Data sources: MEDLINE, CINAHL and PsycINFO databases were searched for studies on palliative care interventions in residential aged care that used facilitation, published between 2000 and 2024. Data extraction and synthesis followed realist principles to identify context-mechanism-outcome configurations.

Results: Twenty-three articles describing 16 palliative care interventions were included in the review. Facilitation was found to be effective when it fostered a shared understanding of the intervention, tailored its components to fit staff workflow and built trust among stakeholders. These processes contributed to normalisation of the intervention and transition of ownership of both the intervention and facilitation process. Proactive support from the facilitator in addition to action learning was most effective at developing learning systems and staff comfort and confidence.

Conclusions: The realist programme theory developed in this study provides a foundation for ongoing testing and refinement, with the aim of accelerating evidence uptake by residential aged care staff and ultimately improving palliative care outcomes for residents.

背景:在居家养老中实施循证姑息治疗的挑战已得到广泛认可。促进通常被认为是应对这些挑战的有效实施战略。然而,关于该战略如何具体适用于这种情况的指导有限。目的:了解背景因素和因果过程(机制),这些因素和因果过程(机制)影响了旨在改善养老院姑息治疗的干预措施的便利性,并发展一个现实主义的项目理论,解释如何最好地支持它们的实施。设计:以RAMESES标准为指导的现实主义审查。协议在PROSPERO上注册(CRD42023447043)。数据来源:检索MEDLINE, CINAHL和PsycINFO数据库,检索2000年至2024年间发表的使用便利化的住宅老年护理中姑息治疗干预的研究。数据提取和合成遵循现实主义原则,以确定上下文-机制-结果配置。结果:23篇描述16种姑息治疗干预措施的文章被纳入本综述。研究发现,促进是有效的,因为它促进了对干预措施的共同理解,使其组成部分适合工作人员的工作流程,并在利益相关者之间建立信任。这些进程促进了干预的正常化以及干预和促进进程的所有权的过渡。除了行动学习之外,引导者的积极支持在开发学习系统和员工的舒适和信心方面是最有效的。结论:本研究中发展的现实主义程序理论为持续的测试和完善提供了基础,目的是加速住宅老年护理人员对证据的吸收,最终改善居民的姑息治疗结果。
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引用次数: 0
A 10-year service evaluation of a multidisciplinary neuro-palliative care model in motor neuron disease: Impact on palliative care service delivery & advance care planning. 运动神经元疾病多学科神经-姑息治疗模式的10年服务评估:对姑息治疗服务提供和提前护理计划的影响。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-16 DOI: 10.1177/02692163251396020
Wai Kei Vicky Chung, Ka Po Chan, Dany Young Hsu, Yi Ka Samantha Ma, Lok Yiu Eric Chan, Shi Hon Ng, Siu Lun Eddie Chow, Yeuk Fai Hong, Yu Hong John Chan, Yiu Keung Ma, Savio Lee, Wai Cheung Jennifer Lui, Hon Wai Benjamin Cheng

Background: Multidisciplinary neuro-palliative care has been increasingly recommended for the management of patients with motor neuron disease. While international guidelines have highlighted the importance of early palliative care referral, the best model of practice has not been well-defined.

Aim: The objective of this study is to evaluate the outcomes of a structured multidisciplinary neuro-palliative care model developed in regional hospitals in Hong Kong.

Design: A 10-year retrospective chart review.

Setting/participants: Adult motor neuron disease patients under care of three regional hospitals in Hong Kong. Data of patients under the care of multidisciplinary neuro-palliative care taskforce and those who were not were analyzed.

Results: There were 140 motor neuron disease patients included in study. Patients in multidisciplinary neuro-palliative care group received more healthcare intervention and palliative care services, including occupational therapist (92.86% vs 78.57%, p = 0.021), dietician (67.35% vs 42.86%, p = 0.007) and speech therapist (96.94% vs 76.19%, p = 0.000) services, community support by non-governmental organizations (74.49% vs 19.05%, p = 0.000) and formal bereavement support (78.26% vs 17.07%, p = 0.000). Significantly more patients in multidisciplinary neuro-palliative care group had completed Advance Medical Directives (46.94% vs 4.76%, p = 0.000). Patients under multidisciplinary care had longer survival compared to those who were not (HR 0.539, 95% CI 0.372-0.782, p = 0.001). This remains significant after adjusting for factors affecting survival in multivariate analysis.

Conclusions: Multidisciplinary neuro-palliative care demonstrated benefits in motor neuron disease patients in terms of better care coordination and service delivery, higher rate of Advance Medical Directive completion, with possible better survival observed. Future prospective studies are warranted to assess the impact on patient-centered outcomes.

背景:多学科神经姑息治疗越来越多地被推荐用于运动神经元疾病患者的治疗。虽然国际指南强调了早期姑息治疗转诊的重要性,但最佳实践模式尚未得到明确界定。目的:本研究的目的是评估在香港地区医院发展的结构化多学科神经姑息治疗模式的结果。设计:10年回顾性图表回顾。地点/参与者:在香港三家区域医院接受治疗的成年运动神经元疾病患者。对接受多学科神经姑息治疗工作组治疗的患者和未接受多学科神经姑息治疗工作组治疗的患者进行数据分析。结果:共纳入140例运动神经元疾病患者。多学科神经姑息治疗组患者获得更多的保健干预和姑息治疗服务,包括职业治疗师(92.86% vs 78.57%, p = 0.021)、营养师(67.35% vs 42.86%, p = 0.007)和语言治疗师(96.94% vs 76.19%, p = 0.000)服务、非政府组织的社区支持(74.49% vs 19.05%, p = 0.000)和正式的丧亲支持(78.26% vs 17.07%, p = 0.000)。多学科神经姑息治疗组患者完成预先医疗指令的比例明显高于对照组(46.94% vs 4.76%, p = 0.000)。接受多学科治疗的患者比未接受多学科治疗的患者生存时间更长(HR 0.539, 95% CI 0.372-0.782, p = 0.001)。在多变量分析中调整了影响生存的因素后,这仍然是显著的。结论:多学科神经姑息治疗在运动神经元疾病患者中表现出更好的护理协调和服务提供,更高的预先医疗指令完成率,可能有更好的生存率。未来的前瞻性研究有必要评估对以患者为中心的结果的影响。
{"title":"A 10-year service evaluation of a multidisciplinary neuro-palliative care model in motor neuron disease: Impact on palliative care service delivery & advance care planning.","authors":"Wai Kei Vicky Chung, Ka Po Chan, Dany Young Hsu, Yi Ka Samantha Ma, Lok Yiu Eric Chan, Shi Hon Ng, Siu Lun Eddie Chow, Yeuk Fai Hong, Yu Hong John Chan, Yiu Keung Ma, Savio Lee, Wai Cheung Jennifer Lui, Hon Wai Benjamin Cheng","doi":"10.1177/02692163251396020","DOIUrl":"https://doi.org/10.1177/02692163251396020","url":null,"abstract":"<p><strong>Background: </strong>Multidisciplinary neuro-palliative care has been increasingly recommended for the management of patients with motor neuron disease. While international guidelines have highlighted the importance of early palliative care referral, the best model of practice has not been well-defined.</p><p><strong>Aim: </strong>The objective of this study is to evaluate the outcomes of a structured multidisciplinary neuro-palliative care model developed in regional hospitals in Hong Kong.</p><p><strong>Design: </strong>A 10-year retrospective chart review.</p><p><strong>Setting/participants: </strong>Adult motor neuron disease patients under care of three regional hospitals in Hong Kong. Data of patients under the care of multidisciplinary neuro-palliative care taskforce and those who were not were analyzed.</p><p><strong>Results: </strong>There were 140 motor neuron disease patients included in study. Patients in multidisciplinary neuro-palliative care group received more healthcare intervention and palliative care services, including occupational therapist (92.86% vs 78.57%, <i>p</i> = 0.021), dietician (67.35% vs 42.86%, <i>p</i> = 0.007) and speech therapist (96.94% vs 76.19%, <i>p</i> = 0.000) services, community support by non-governmental organizations (74.49% vs 19.05%, <i>p</i> = 0.000) and formal bereavement support (78.26% vs 17.07%, <i>p</i> = 0.000). Significantly more patients in multidisciplinary neuro-palliative care group had completed Advance Medical Directives (46.94% vs 4.76%, <i>p</i> = 0.000). Patients under multidisciplinary care had longer survival compared to those who were not (HR 0.539, 95% CI 0.372-0.782, <i>p</i> = 0.001). This remains significant after adjusting for factors affecting survival in multivariate analysis.</p><p><strong>Conclusions: </strong>Multidisciplinary neuro-palliative care demonstrated benefits in motor neuron disease patients in terms of better care coordination and service delivery, higher rate of Advance Medical Directive completion, with possible better survival observed. Future prospective studies are warranted to assess the impact on patient-centered outcomes.</p>","PeriodicalId":19849,"journal":{"name":"Palliative Medicine","volume":" ","pages":"2692163251396020"},"PeriodicalIF":3.9,"publicationDate":"2025-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145763443","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
'It showed me that he sensed I was there. . .', The 'relational' use of an electrophysiological tool for evaluating the level of discomfort of people at the end of life: A reflexive thematic analysis. 她说,这表明他感觉到我在那里……的“关系”使用电生理工具来评估人们在生命结束时的不适程度:反身性主题分析。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-13 DOI: 10.1177/02692163251393576
Chloé Prod'homme, Flore Homey-Dusautois, Manon Denié, Licia Touzet, Claire Pasqualini, Magali Pierrat, François Puisieux, Philippe Sabot

Background: The Analgesia Nociception Index device may serve as a guide to a person's parasympathetic activity via the heart rate variability. It is used to assess the level of discomfort of non-communicative patients at the end of life. Although the index's acceptability in palliative care have been demonstrated, the healthcare professionals and the patient's relatives did not have direct, continuous access to the monitor screen.

Aim: To evaluate how healthcare professionals and patients' relatives in a palliative care unit perceived the use of the Analgesia Nociception Index.

Design: A qualitative, comprehensive, two-centre study was based on individual, semidirective interviews. The interview data were evaluated in a reflexive, thematic analysis.

Setting/participants: We interviewed (i) healthcare professionals who used the Analgesia Nociception Index in their routine practice and (ii) the relatives of patients who had been monitored with the tool during their stay in the unit.

Results: A total of 28 interviews were conducted. The device was perceived mainly to be an additional medical technique for increasing a person's level of comfort. Some professionals highlighted a risk of re-medicalizing the end of life, with a display screen that distracted attention from the person. A few relatives stated that the changes on the screen were a way of staying in touch with their loved one's perception. The tool helped to increase the value of the relatives' support.

Conclusion: The present results might help clinicians to tailor the monitoring to each patient's situation and to communicate more effectively with both care teams and relatives.

背景:镇痛痛觉指数装置可以通过心率变异性来指导人的副交感神经活动。它被用来评估非交流患者在生命结束时的不适程度。虽然该指数在姑息治疗中的可接受性已被证明,但医疗保健专业人员和患者亲属并没有直接、连续地访问监测屏幕。目的:评估姑息治疗单位的医疗保健专业人员和患者亲属对使用镇痛伤害感觉指数的看法。设计:一个定性的、全面的、双中心的研究是基于个人的、半指导性的访谈。访谈数据以反身性专题分析进行评估。环境/参与者:我们采访了(i)在日常实践中使用镇痛伤害感觉指数的医疗保健专业人员和(ii)在住院期间使用该工具进行监测的患者的亲属。结果:共进行了28次访谈。该装置主要被认为是一种额外的医疗技术,以提高一个人的舒适度。一些专业人士强调了将生命终结重新医学化的风险,因为屏幕会分散人们对死者的注意力。一些亲戚表示,屏幕上的变化是他们与亲人保持联系的一种方式。该工具有助于提高亲属支持的价值。结论:本研究结果可以帮助临床医生根据患者的情况量身定制监测,并与护理团队和家属进行更有效的沟通。
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引用次数: 0
Models, components and outcomes of palliative and end-of-life care provided to adults living at home: A systematic umbrella review of reviews. 为在家生活的成年人提供姑息治疗和临终关怀的模式、组成部分和结果:综述的系统总括性综述。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-01 Epub Date: 2025-09-04 DOI: 10.1177/02692163251362567
Sophie Pask, Chukwuebuka Okwuosa, Ahmed Mohamed, Rebecca Price, Jennifer Young, Thomas Curtis, Stuart Henderson, Ishbel Winter-Luke, Anisha Sunny, Rachel L Chambers, Sarah Greenley, Therese Johansson, Anna E Bone, Stephen Barclay, Irene J Higginson, Katherine E Sleeman, Fliss Em Murtagh

Background: There is growing demand for home-based palliative care because of patient preference, and increased number of deaths. Optimal models for community-based palliative and end-of-life care are unknown.

Aim: To identify, synthesise and describe review-level evidence to better understand models of palliative and end-of-life care for adults living at home, and examine components of these models and their association with outcomes.

Design: Systematic umbrella review, using key concepts established a priori from Firth et al. and Brereton et al.''s model descriptions. Quality assessment used AMSTAR-2 or equivalent.

Data sources: MEDLINE, EMBASE, CINAHL, Cochrane Database, Epistemonikos (inception - 2024), supplemented by CareSearch, PROSPERO and citation searches.

Results: From 6683 initial papers, n = 66 reviews were included. Seven models of care were identified; by setting (in-home, outpatient); type of professionals (specialist, integrated, non-specialist); or mode (telehealth, education/training). Components included: holistic person-centred assessment, skilled professionals, access to medicines/care/equipment, patient/family support, advance care planning, integration of services, virtual/remote technology and education. We categorised outcomes into: (i) patient outcomes, (ii) family/informal caregiver outcomes, (iii) professional outcomes and iv) service utilisation/cost outcomes. The 'in-home palliative care' model was most researched with good evidence of positive benefit. Specialist and integrated models of care were next most researched, with evidence of improved patient and service utilisation outcomes. Cost-effectiveness evidence was lacking.

Conclusion: This meta-level evidence supports provision of in-home palliative care, with most review level evidence showing positive effect on patient outcomes. There was also evidence to support specialist palliative care and integration of primary palliative care with specialist support.

背景:由于患者的偏好和死亡人数的增加,对以家庭为基础的姑息治疗的需求不断增长。以社区为基础的姑息治疗和临终关怀的最佳模式尚不清楚。目的:识别、综合和描述综述级证据,以更好地理解在家生活的成年人的姑息治疗和临终关怀模型,并检查这些模型的组成部分及其与结果的关联。设计:使用Firth et al.和breereton et al.的模型描述中先验建立的关键概念进行系统的伞形回顾。质量评估采用AMSTAR-2或同等标准。数据来源:MEDLINE, EMBASE, CINAHL, Cochrane Database, Epistemonikos (inception - 2024),辅以CareSearch, PROSPERO和引文搜索。结果:从6683篇初始论文中,纳入了n = 66篇综述。确定了七种护理模式;通过设置(在家,门诊);专业人员类型(专科、综合、非专科);或模式(远程医疗、教育/培训)。组成部分包括:以人为本的全面评估、熟练的专业人员、获得药品/护理/设备、病人/家属支持、预先护理规划、综合服务、虚拟/远程技术和教育。我们将结果分为:(i)患者结果,(ii)家庭/非正式照顾者结果,(iii)专业结果和(iv)服务利用/成本结果。“家庭姑息治疗”模式的研究最多,有充分的证据表明其积极的益处。专家和综合护理模式是下一个研究最多的,有证据表明,改善了患者和服务的利用结果。缺乏成本效益证据。结论:这一荟萃水平的证据支持提供家庭姑息治疗,大多数回顾水平的证据显示对患者预后有积极影响。也有证据支持专科姑息治疗和初级姑息治疗与专科支持的整合。
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引用次数: 0
A qualitative study exploring the perceptions and understandings of advance care planning by people with treatable but not curable cancer. 一项质性研究,探讨可治疗但不可治愈的癌症患者对预先护理计划的看法和理解。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-01 Epub Date: 2025-08-31 DOI: 10.1177/02692163251363752
Ruth Board, Sean Hughes, Katherine Stewart, Tomoko Lewis, Sheila Payne

Background: Advance care planning for those with treatable but not curable cancer is considered good practice because innovations in treatment options make prognostication much more uncertain. Little is known about how such patients approach future planning.

Aim: To elicit the perceptions and understandings of advance care planning by patients with treatable but not curable cancer.

Design: Qualitative, in-depth interviews with patients were analysed using a reflexive thematic approach within a social constructivist paradigm.

Setting/participants: Twenty patients with treatable but not curable cancer were recruited to the study from a cancer care centre. Nine patients choose to be accompanied by family members.

Results: Four integrated themes highlighted that increasing availability of on-going and novel treatments, with survival beyond initial prognosis, impeded advance care planning and contributed to a sense of uncertainty. Participants described the existential difficulty of holding contradictory thoughts about living with cancer while simultaneously contemplating end of life preferences. Most participants did not recognise conversations with clinicians as advance care planning, including 'do not resuscitate' decisions. Most participants preferred to discuss future care, social and funeral arrangements with family. A few, with caring responsibilities, proactively undertook advance care planning.

Conclusions: This study highlights challenges in advance care planning for those with treatable but not curable cancer, especially when uncertain about disease progression. Data suggest that a separation between conversations about medical planning and that of a more social and personal nature may be needed. Further research should investigate the impact of uncertainty of survival on advance care planning practice.

背景:对那些可治疗但不能治愈的癌症患者进行预先护理计划被认为是良好的做法,因为治疗方案的创新使预后更加不确定。人们对这类患者如何规划未来知之甚少。目的:探讨可治不可治癌症患者对事前护理计划的认知和认识。设计:采用社会建构主义范式中的反身性主题方法,对患者进行定性深入访谈。环境/参与者:从癌症护理中心招募了20名可治疗但无法治愈的癌症患者参加研究。9名患者选择由家人陪同。结果:四个综合主题强调了持续治疗和新型治疗的可用性增加,生存期超过了最初的预后,阻碍了预先的护理计划,并导致了不确定性。参与者描述了与癌症共存的矛盾想法,同时考虑结束生命的选择,这是存在的困难。大多数参与者没有认识到与临床医生的对话是预先的护理计划,包括“不复苏”的决定。大多数参与者更愿意与家人讨论未来的护理、社交和葬礼安排。少数有照顾责任的人主动进行预先护理计划。结论:这项研究强调了对那些可治疗但无法治愈的癌症患者进行预先护理计划的挑战,特别是在疾病进展不确定的情况下。数据表明,可能需要将有关医疗计划的谈话与更具社交和个人性质的谈话区分开来。进一步的研究应探讨生存不确定性对预先护理计划实践的影响。
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引用次数: 0
Methodological reflections to support good practice in using nominal group techniques: Insights from applications in palliative care studies. 支持使用名义小组技术的良好实践的方法学反思:来自缓和治疗研究应用的见解。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-01 Epub Date: 2025-09-28 DOI: 10.1177/02692163251368974
Hui-Ju Liang, Qian Xiong, Nancy Preston

Background: High-quality recommendations require rigorous methods based on strong evidence to improve clinical practice. In palliative and end-of-life care, expert consensus is sometimes achieved through nominal group techniques. However, its practical challenges are often underestimated, potentially compromising the rigour and the quality of the recommendations.Methodological reflections:The methodological reflections on developing recommendations using the nominal group technique are discussed in this paper. These reflections are drawn from its theoretical foundations and applications in palliative care research, including a Taiwanese study on preparing families for a relative's death. We highlight key issues such as the omission of pilot meetings and the underestimation of practical challenges in conducting group meetings, including time constraints and real-world uncertainties, especially during the stages of listing, clarifying, voting and ranking recommendations. Cultural factors are often overlooked, as seen in the example study, where the moderator avoided interruptions to show respect and politeness during the meeting. Additionally, valuable data gathered during meetings is often underutilised. These factors collectively can undermine the quality of recommendations. Based on these insights, we offer suggestions for improvement.Key suggestions:Pilot meetings should be conducted and reported to demonstrate how they inform the main meeting, ensuring research rigour and recommendation quality. Sufficient time should be allocated for listing and clarifying recommendations and in societies with specific etiquettes (e.g. minimising interruptions to show politeness). Further qualitative analysis of meeting transcripts is suggested to better understand the context and rationale behind the recommendations and enhance their applicability and clarity.

背景:高质量的推荐需要基于有力证据的严格方法来改善临床实践。在姑息治疗和临终关怀中,有时通过名义上的小组技术达成专家共识。然而,它的实际挑战往往被低估,潜在地损害了建议的严谨性和质量。方法学反思:方法学反思发展建议使用名义集团技术进行了讨论。这些思考来自于它的理论基础和在姑息治疗研究中的应用,包括台湾的一项关于家庭为亲人死亡做准备的研究。我们强调了一些关键问题,如试点会议的遗漏和对开展小组会议的实际挑战的低估,包括时间限制和现实世界的不确定性,特别是在列出、澄清、投票和建议排名阶段。文化因素往往被忽视,正如在例子研究中所看到的,主持人在会议期间避免打断以显示尊重和礼貌。此外,在会议期间收集的宝贵数据往往没有得到充分利用。这些因素共同会影响推荐的质量。基于这些见解,我们提出了改进建议。重点建议:试点会议应进行并报告,以展示它们如何通知主要会议,确保研究的严谨性和建议的质量。应该分配足够的时间来列出和澄清建议,并在有特定礼仪的社会中(例如,尽量减少打断以表示礼貌)。建议进一步对会议记录进行定性分析,以便更好地了解各项建议背后的背景和理由,并提高其适用性和明确性。
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引用次数: 0
Feeling groovy? The present and future of psychedelic research in palliative care. groovy感觉怎么样?姑息治疗中致幻剂研究的现状与未来。
IF 3.9 2区 医学 Q1 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-12-01 Epub Date: 2025-11-08 DOI: 10.1177/02692163251393561
Justin J Sanders, Yvan Beaussant
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引用次数: 0
期刊
Palliative Medicine
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