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A validation study of the modified Chinese version of the integrated palliative care outcome scale (IPOS) among patients with advanced illness in Hong Kong. 改良中文版综合姑息治疗结局量表(IPOS)在香港晚期患者中的验证研究
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-04 DOI: 10.1186/s12904-025-01910-3
Xun Fang, Amy Yin-Man Chow, Iris Kwan Ning Chan, Victoria Ka-Ying Hui, Richard Harding, Ping Guo
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引用次数: 0
A feasibility trial of advance care planning for patients with terminal cancer in primary hospitals. 基层医院晚期癌症患者提前护理计划可行性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01920-1
Yi Li, Siyan Liang, Liyun Huang, Zhijun Ding

Objective: To investigate the effects of advance care planning (ACP) on patients with terminal cancer in primary hospitals.

Methods: Convenience sampling was used to select 60 patients with terminal cancer and their primary caregivers from primary hospitals. The control group received routine care, while the intervention group received routine care plus an ACP-based care intervention. Patients and their primary caregivers' anxiety and depression levels were assessed before and after the intervention. We compared several outcomes between the ACP intervention and routine care control group, including quality of life scores (EORTC QLQ-C30), frequency of intensive care unit (ICU) admissions, length of hospital stay within 30 days before death, and direct medical costs.

Results: Two weeks post-intervention, caregivers' anxiety and depression were significantly lower in the ACP group than in the control group (P < 0.05). The ACP group also showed significant improvements in quality of life, including role functioning, pain, nausea/vomiting, dyspnea, constipation, diarrhea. At 1 month post-intervention, both patients and caregivers had significantly reduced anxiety/depression in the ACP group (P < 0.05). All quality-of-life dimensions significantly improved with ACP (P < 0.05). There were also significant reductions in ICU admission frequency, length of hospital stay within 30 days before death, and direct medical costs in the ACP group relative to the control group (P < 0.05).

Conclusion: ACP intervention can be successfully implemented for patients with terminal cancer in primary hospitals when clinicians receive structured training and standardized documentation and family engagement protocols are followed. Furthermore, the findings suggest that ACP may help reduce anxiety and depression in patients and their caregivers, improve patients' quality of life, and has the potential to decrease ICU admissions, hospital stay length, and direct medical costs.

目的:探讨基层医院提前护理计划(ACP)对晚期肿瘤患者的影响。方法:采用方便抽样法抽取60例基层医院晚期肿瘤患者及其主要护理人员。对照组采用常规护理,干预组采用常规护理加acp护理干预。在干预前后评估患者及其主要照顾者的焦虑和抑郁水平。我们比较了ACP干预组和常规护理对照组之间的几个结局,包括生活质量评分(EORTC QLQ-C30)、重症监护病房(ICU)入院频率、死亡前30天内住院时间和直接医疗费用。结果:干预后2周,ACP组护理人员的焦虑和抑郁情绪明显低于对照组(P结论:临床医生接受结构化培训,遵循标准化文件和家庭参与协议,ACP干预可以在基层医院成功实施晚期癌症患者。此外,研究结果表明,ACP可能有助于减少患者及其护理人员的焦虑和抑郁,改善患者的生活质量,并有可能减少ICU住院次数、住院时间和直接医疗费用。
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引用次数: 0
Patients' experiences of quality in palliative care and advance care planning in primary care: a qualitative study. 患者对姑息治疗质量的体验与初级保健的预先护理计划:一项质性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01919-8
Liv Skomakerstuen Ødbehr, Aasa Serholt Jensen, Aina Korup, Reidun Hov, Harald Sanaker, Tuva Sandsdalen

Background: Primary healthcare services provide care to patients and their relatives during the late palliative phase in the patients' home or in facilities such as nursing homes. Patients receiving palliative care may be vulnerable due to the total pain of the situation they are facing, which requires great expertise of healthcare professionals in meeting the patients' needs. The aim in this study was to explore patients' experiences of quality in palliative care and advance care planning in primary healthcare services.

Methods: This study has a qualitative design. Five patients in the late palliative phase in primary care from different municipalities in Norway participated. All participants had experiences across both primary and specialist care settings. Individual interviews were conducted between January 2022 and July 2023. The interviews were transcribed verbatim and analysed using content analysis. The study adheres to the checklist of the consolidated criteria for reporting qualitative research.

Results: The findings are described in terms of four main themes: (1) trust in supportive clinicians to ease their future path, (2) perceived quality of palliative care depended on the context, (3) advance care planning helped to tidy up important aspects of life, and (4) personalized family support and involvement eased burdens for patients and relatives.

Conclusion: Patients in late palliative phase and their experiences of palliative care highlight the need for information and support from healthcare professionals, but the organization of primary healthcare settings does not adequately address these needs. A key aspect of quality in care is comprehensive and individualized follow-up throughout the patient's illness trajectory. Another area that affects the quality of palliative care is the communication skills of healthcare professionals. Care plans for the end- of -life were developed through advance care planning, but the quality of implementation varied in home care. A huge concern for patients in the late palliative phase was if and how their relatives received the support they needed.

背景:初级卫生保健服务在患者家中或疗养院等设施中为晚期姑息期患者及其亲属提供护理。患者接受姑息治疗可能是脆弱的,因为他们所面临的情况的全部痛苦,这需要医疗保健专业人员的专业知识,以满足患者的需求。本研究的目的是探讨患者在初级卫生保健服务中对姑息治疗质量和提前护理计划的体验。方法:本研究采用定性设计。来自挪威不同城市的初级保健晚期姑息治疗阶段的5名患者参加了研究。所有参与者都有初级和专科护理的经历。个人访谈在2022年1月至2023年7月期间进行。访谈被逐字记录下来,并使用内容分析进行分析。本研究遵循报告定性研究的综合标准清单。结果:研究结果描述了四个主要主题:(1)对支持临床医生的信任,以缓解他们的未来道路;(2)感知姑息治疗质量取决于环境;(3)预先护理计划有助于整理生活的重要方面;(4)个性化的家庭支持和参与减轻了患者和亲属的负担。结论:晚期姑息期患者及其姑息治疗经历突出了对卫生保健专业人员的信息和支持的需求,但初级卫生保健机构的组织不能充分满足这些需求。护理质量的一个关键方面是在患者的整个疾病轨迹中进行全面和个性化的随访。影响姑息治疗质量的另一个方面是保健专业人员的沟通技巧。临终关怀计划是通过预先护理计划制定的,但在家庭护理中实施的质量各不相同。在晚期姑息治疗阶段,患者最关心的是他们的亲属是否以及如何得到他们所需要的支持。
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引用次数: 0
Holistic symptom burden and prognostic value of palliative care needs in heart failure: insights from the integrated palliative care outcome scale. 心衰患者的整体症状负担和姑息治疗需求的预后价值:来自综合姑息治疗结果量表的见解。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-11-03 DOI: 10.1186/s12904-025-01897-x
Do Thi Hien, Nguyen Thi Kieu Ly, Nguyen Quy Quyen, Le Thanh Ha, Nguyen Thi Hong Nga, To Lan Phuong, Nguyen Thanh Hai, Doan Van Nghia, Do Thi Trang, Pham Truong Son, Nguyen Van Hinh

Introduction: Heart failure (HF) patients experience significant palliative care needs (PCN), which can be assessed using the Integrated Palliative Care Outcome Scale (IPOS). This study evaluates PCN in hospitalized HF patients and their association with patient characteristics and mortality.

Population and methods: A prospective observational study was conducted on 160 hospitalized HF patients in Vietnam. PCN were assessed using IPOS (17 questions, scored 0-4, none to severe). PCN was defined as ≥ 2 items scoring 4 or ≥ 3 items scoring ≥ 3. All-cause mortality was tracked post-discharge.  RESULTS: PCN were identified in 59.4% of patients, with shortness of breath (57.5%), weakness (51.9%), and pain (45.6%) being the most common symptoms at moderate severity. PCN correlated with longer HF duration, lower eGFR, and specific medication use (intravenous drugs, RAAS inhibitors, MRAs). PCN independently predicted higher post-discharge mortality (adjusted HR: 2.63, 95% CI 1.06-6.53, p=0.037).

Conclusion: PCN are prevalent in hospitalized HF patients and independently associated with increased mortality, underscoring the need for routine PCN assessment and early palliative care integration.

心力衰竭(HF)患者具有显著的姑息治疗需求(PCN),可使用综合姑息治疗结局量表(IPOS)进行评估。本研究评估住院HF患者的PCN及其与患者特征和死亡率的关系。人群与方法:对越南住院的160例心衰患者进行了前瞻性观察研究。PCN采用IPOS评估(17个问题,得分0-4,无严重)。PCN定义为≥2项得分为4或≥3项得分≥3。出院后追踪全因死亡率。结果:59.4%的患者存在PCN,其中呼吸短促(57.5%)、虚弱(51.9%)和疼痛(45.6%)是最常见的中度症状。PCN与较长的HF持续时间、较低的eGFR和特定药物使用(静脉注射药物、RAAS抑制剂、MRAs)相关。PCN独立预测较高的出院后死亡率(调整后HR: 2.63, 95% CI 1.06-6.53, p=0.037)。结论:PCN在住院HF患者中普遍存在,并与死亡率增加独立相关,强调了常规PCN评估和早期姑息治疗整合的必要性。
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引用次数: 0
Toward a comprehensive research agenda: exploring the health economics of palliative care in Australia. 走向一个全面的研究议程:探索澳大利亚姑息治疗的健康经济学。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-30 DOI: 10.1186/s12904-025-01867-3
Chris Schilling, Cate Bailey, Katharina Merollini, Alison Giles, Cara Platts, David C Currow, Elise Button, Fiona Runacres, Gregory B Crawford, Gregory Merlo, Jaclyn Yoong, Jennifer Philip, Jennifer Tieman, Meera R Agar, Patsy Yates, Peter Hudson, Vijaya Sundararajan, Hannah Carter, Nikki McCaffrey

Background: Despite significant advances in the availability and quality of palliative care globally, health economics research to understand the value of palliative care in Australian settings remains scarce. To address knowledge gaps and foster evidence-informed policy, funding and practice, this paper presents a consensus-driven research agenda for the health economics of palliative care in Australia.

Methods: A panel of 27 Australian experts was convened, including health economists, palliative care clinicians/researchers, policy makers/government officials, and representatives from the national peak body for palliative care. Panel members completed a survey, participated in a forum and collectively drafted the research agenda.

Results: The panel recommended 16 health economics research priorities across four key areas: (1) person-centred outcomes; (2) costs; (3) economic evaluation; and (4) data and metrics. Specific priorities included: comprehensively capturing the benefits of palliative care for people with life-limiting illnesses and their informal carers; understanding the diversity of preferences for palliative care across the population; capturing informal caring costs within economic evaluations; embedding economic evaluation within clinical trials and health services studies; and quantifying the extent and location of unmet palliative care needs.

Conclusions: This paper outlines high-priority research actions to generate the economic evidence required for appropriate funding and resource allocation in palliative care. The research agenda serves as a strategic tool to help researchers address gaps without duplicating efforts. By focusing on these priorities, we aim to support the development of more effective, equitable and sustainable palliative care services across Australia.

背景:尽管在全球范围内姑息治疗的可得性和质量方面取得了重大进展,但在澳大利亚环境中了解姑息治疗价值的卫生经济学研究仍然很少。为了解决知识差距和促进循证政策,资金和实践,本文提出了一个共识驱动的研究议程,在澳大利亚姑息治疗的卫生经济学。方法:召集了一个由27名澳大利亚专家组成的小组,包括卫生经济学家、姑息治疗临床医生/研究人员、政策制定者/政府官员和国家姑息治疗高峰机构的代表。小组成员完成了一项调查,参加了一个论坛,并集体起草了研究议程。结果:专家组在四个关键领域建议了16项卫生经济学研究重点:(1)以人为本的结果;(2)成本;(3)经济评价;(4)数据和指标。具体优先事项包括:全面利用对患有限制生命疾病的人及其非正式照护者的姑息治疗的益处;了解不同人群对姑息治疗偏好的多样性;在经济评价中纳入非正式护理成本;将经济评价纳入临床试验和卫生服务研究;量化未满足的姑息治疗需求的程度和位置。结论:本文概述了在姑息治疗中产生适当资金和资源分配所需的经济证据的高优先级研究行动。该研究议程是一种战略工具,可以帮助研究人员在不重复工作的情况下解决差距。通过关注这些优先事项,我们的目标是支持在澳大利亚发展更有效、公平和可持续的姑息治疗服务。
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引用次数: 0
Bereaved informal carers' experience of an interventional clinical research project at the end-of-life: a qualitative interview study. 丧偶的非正式照顾者在临终介入临床研究项目中的经验:一项定性访谈研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-29 DOI: 10.1186/s12904-025-01872-6
Miriam White, Michael Connolly, Andrew Davies

Background: This qualitative study was undertaken to obtain feedback from informal carers about their experiences of involvement in a cluster randomised trial of clinically-assisted hydration in the last days of life ("CHELsea II trial").

Methods: Informal carers that had taken part in the trial post-bereavement postal survey, and had expressed an interest in taking part in further research, were approached about this post-bereavement qualitative study. Interviews were conducted remotely, using a semi-structured interview schedule that asked about the impact of the research on patient / their end-of-life care, the impact of the research on the informal carer, and the informal carers views on research at the end-of-life. The interview transcripts were thematically analysed.

Results: Fifteen informal carers took part in the study prior to thematic saturation. Invariably informal carers reported that there was no negative impact on the patient or themselves, and were positive about taking part in future end-of-life research (if the situation occurred). The analysis generated three themes: (a) Purpose, helping, and no disruption; (b) Preparing for what was to come; and (c) Timing of research at the end-of-life.

Conclusions: This study confirms that research can be undertaken in patients at the end-of-life without negatively impacting the experience. Moreover, patients and their informal carers want to take part in such research, as it provides them with purpose during this time, and gives them the chance of helping future patients.

Trial registration: ISRCT Registry (registry number - ISRCTN65858561) - registered 14/09/2021.

背景:本定性研究旨在从非正式护理人员那里获得他们在生命最后几天参与临床辅助水合作用的聚类随机试验(“切尔西II试验”)的反馈。方法:对参加过初步的失丧后邮政调查,并表示有兴趣参加进一步研究的非正式照顾者,进行了有关失丧后定性研究的接触。访谈是远程进行的,采用半结构化访谈时间表,询问研究对患者/他们的临终关怀的影响,研究对非正式护理人员的影响,以及非正式护理人员对临终研究的看法。对访谈记录进行了主题分析。结果:15名非正式照顾者在主题饱和之前参加了研究。非正式护理人员无一例外地报告说,这对病人或他们自己没有负面影响,并且对参与未来的临终研究(如果发生这种情况)持积极态度。分析产生了三个主题:(a)目的、帮助和不干扰;(b)为将要发生的事情做准备;(c)生命结束时的研究时间。结论:本研究证实,研究可以在患者临终时进行,而不会对体验产生负面影响。此外,患者和他们的非正式护理人员都希望参与这样的研究,因为这让他们在这段时间里有了目标,并给了他们帮助未来患者的机会。试验注册:ISRCT注册中心(注册编号- ISRCTN65858561) -注册日期:2021年9月14日。
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引用次数: 0
The effect of a Finnish national palliative care specialisation education on nurse's palliative care competence: A pretest-posttest study. 芬兰国家姑息治疗专科教育对护士姑息治疗能力的影响:一项前测后测研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-28 DOI: 10.1186/s12904-025-01913-0
Maarit Lähteenmäki, Minna Koskimäki, Mervi Roos, Virpi Sulosaari, Minna Hökkä

Background: Nurses play an important role in caring for patients in palliative care and they need sufficient palliative care competence. Additionally, the need for palliative care is increasing. Therefore, palliative care and end-of-life care is one of the fields where nurses' specialisation education is needed the most. The aim of this study was to assess the effect of postgraduate specialist education on nurses' palliative care competence and the association between participants' age or work experiences and changes in their palliative care competencies.

Methods: The data were collected through electronic surveys at the beginning and at the end of specialisation education in 17 universities of applied sciences in Finland. The survey was conducted using the Nurses' Core Competence in Palliative Care (NCPC) instrument. The survey response rate was 89% (pre-training) and 69% (post training). Of 286 nurses, 143 completed both the pre- and post-survey. The data were analysed using nonparametric tests. The level of statistical significance was set at p ≤ 0.05.

Results: After the education participants' self-assessed core competencies in palliative care increased compared to before the education, indicating that their knowledge and skills increased in all five domains. Knowledge in Symptom Management, Systematic Use of the Edmonton Symptom Assessment System (ESAS), Teamwork Skills and Interpersonal Skills increased statistically significantly (P < 0.001). Likewise, Life Closure Skills increased statistically significantly (P = 0.044) after the education. Some associations were found, those who had five years or less of work experience in palliative care or end-of-life care reported a greater increase in Interpersonal Skills compared to those with more than ten years of work experience (P = 0.002). Also, those aged 40 or younger reported a greater increase in Interpersonal Skills than those aged 41-50 (P = 0.017).

Conclusion: This study shows that palliative care specialist education increased nurses' palliative care competence. No statistical association was found between work experience in healthcare and changes in competence; the competence of all participants increased during the education. Palliative care specialist education improves nurses' self-assessed competence in palliative care and may indirectly improve the quality of palliative care.

背景:护士在姑息治疗中扮演着重要的角色,护士需要具备足够的姑息治疗能力。此外,对姑息治疗的需求正在增加。因此,姑息治疗和临终关怀是最需要护士专业教育的领域之一。本研究旨在探讨研究生专科教育对护士缓和疗护能力的影响,以及年龄或工作经验与护士缓和疗护能力变化的关系。方法:对芬兰17所应用科学大学专业教育开始和结束时的学生进行电子问卷调查。采用姑息治疗护士核心能力量表(NCPC)进行调查。调查回复率为89%(培训前)和69%(培训后)。286名护士中,143名完成了前后调查。采用非参数检验对数据进行分析。p≤0.05为差异有统计学意义。结果:与教育前相比,教育后参与者自我评估的姑息治疗核心能力有所提高,表明他们在五个领域的知识和技能都有所提高。症状管理知识、埃德蒙顿症状评估系统(ESAS)的系统使用、团队合作能力和人际交往能力均显著提高(P)。结论:姑息治疗专科教育提高了护士的姑息治疗能力。医疗保健工作经验与能力变化之间无统计学关联;在教育过程中,所有参与者的能力都有所提高。姑息治疗专科教育可提高护士在姑息治疗方面的自我评估能力,并可间接提高姑息治疗的质量。
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引用次数: 0
Mapping study on AI-based technologies in palliative care - a scoping study. 姑息治疗中基于人工智能技术的制图研究——一项范围研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-28 DOI: 10.1186/s12904-025-01909-w
Mariana Silva-Ferreira, Sara Cruz, Michael Sapateiro Luís, Maria Cândida Silva, Sara Monteiro-Reis, Rui Henrique, Carmen Jerónimo, Saint-Clair Lefèvre, Ambre Laplaud, Matthieu Frasca, Lucie Pollet, Lourdes Zurbanobeaskoetxea, Rosana Angles Barbastro, María Isabel Hidalgo García, Beatriz Jiménez Galán, Fátima González Palau, Diana Filipa Marques, Raquel Losada Durán

Background: The aging population and rising prevalence of chronic illnesses emphasize the importance of palliative care (PC), which focuses on enhancing patients' quality of life (QoL) while supporting their families and caregivers. PC integrates multidisciplinary interventions to alleviate the physical, psychological, social, and spiritual suffering of individuals facing serious or terminal illnesses. Concurrently, Artificial Intelligence (AI) advancements have been transforming the healthcare sector, particularly through Clinical Decision Support Systems (CDSS). Leveraged by advanced algorithms and machine learning (ML), these tools analyze large volumes of data to support diagnostics, personalized treatments, and early interventions. In PC, AI has demonstrated potential to enhance early diagnosis, identify support needs, and personalize end-of-life care. ML algorithms help predict symptoms and complications, enabling timely and effective interventions. However, challenges remain, including data privacy concerns, integration into clinical workflows, and ethical implications of AI in sensitive care contexts.

Methods: We conducted a scoping review to map and analyze AI applications on PC. Articles published until May 2024 were identified in two electronic databases. From 542 records, 57 studies met the inclusion criteria. The review explored trends, benefits, and limitations of AI applications, highlighting tools for diagnostic and prognostic support, symptom tracking, shared decision-making, and communication with patients and families.

Results: The findings highlight how digital technologies and AI are revolutionizing communication, care coordination, and symptom control in PC, unlocking remote care options. The review identified key advancements in symptom management, communication, decision support, telemedicine and education areas, while addressing barriers like ethical, legal, and accessibility concerns.

Conclusions: By compiling evidence on AI use in PC, we aimed to empower professionals, researchers, and policymakers to promote more effective, ethical, and person-centered strategies. Ultimately, we provide insights for developing new technologies and establishing protocols that support the safe, equitable, and person-centered implementation of AI in palliative care, and highlight the need to prioritize early identification of patient needs, promote integration between hospital and community care, and establish protocols.

背景:人口老龄化和慢性疾病患病率的上升强调了姑息治疗(PC)的重要性,姑息治疗的重点是提高患者的生活质量(QoL),同时支持他们的家人和照顾者。PC整合了多学科干预,以减轻面临严重或绝症的个人的身体、心理、社会和精神痛苦。与此同时,人工智能(AI)的进步正在改变医疗保健行业,特别是通过临床决策支持系统(CDSS)。借助先进的算法和机器学习(ML),这些工具可以分析大量数据,以支持诊断、个性化治疗和早期干预。在个人电脑领域,人工智能已展现出增强早期诊断、识别支持需求和个性化临终关怀的潜力。机器学习算法有助于预测症状和并发症,实现及时有效的干预。然而,挑战依然存在,包括数据隐私问题、融入临床工作流程以及人工智能在敏感护理环境中的伦理影响。方法:我们进行了范围审查,以绘制和分析PC上的人工智能应用程序。在2024年5月之前发表的文章在两个电子数据库中进行了识别。从542项记录中,有57项研究符合纳入标准。该综述探讨了人工智能应用的趋势、益处和局限性,重点介绍了用于诊断和预后支持、症状跟踪、共享决策以及与患者和家属沟通的工具。结果:研究结果强调了数字技术和人工智能如何彻底改变PC中的沟通、护理协调和症状控制,从而开启了远程护理选择。审查确定了症状管理、沟通、决策支持、远程医疗和教育领域的关键进展,同时解决了道德、法律和可及性等障碍。结论:通过收集个人电脑中人工智能使用的证据,我们旨在使专业人员、研究人员和政策制定者能够促进更有效、更道德、更以人为本的战略。最后,我们为开发新技术和建立支持在姑息治疗中安全、公平和以人为本实施人工智能的协议提供了见解,并强调需要优先考虑早期识别患者需求,促进医院和社区护理之间的整合,并建立协议。
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引用次数: 0
Recognising and alleviating unbearable suffering in residents living in Swiss nursing homes: a grounded theory study on nursing staff's perspectives on sedating medications and palliative sedation. 认识和减轻居民生活在瑞士养老院难以忍受的痛苦:一个接地理论研究护理人员对镇静药物和姑息性镇静的观点。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-27 DOI: 10.1186/s12904-025-01912-1
Maya Monteverde, Monica Fliedner, Eva Soom Ammann, Sandra Kunz, Charlotte Niederhauser, Julia Rehsmann

Background: At the end of life, patients frequently experience distressing symptoms. When they become refractory, sedating medications and palliative sedation (PS) may be used to alleviate suffering. PS is mainly practised in specialist settings, as it requires defined procedures and guidelines. Little is known, however, about how registered nurses (RNs) and healthcare assistants (HCAs) manage refractory symptoms and unbearable suffering in nursing homes and how sedating medications are used in this non-specialist setting. This study explored how RNs and HCAs in Swiss nursing homes recognise, assess, and alleviate unbearable suffering, the challenges they face, and the strategies they employ to alleviate residents' suffering by using sedating medications and PS.

Methods: This qualitative study involved 22 RNs and six HCAs from nursing homes in German-speaking Switzerland. Seven semi-structured focus group interviews were conducted between October 2023 and January 2024, transcribed verbatim, and analysed using a grounded theory approach.

Results: The core category, 'Navigating palliative sedation in nursing homes - tension between alleviating suffering and over-sedating', was identified, with three subcategories: (1) recognising suffering, (2) assessing suffering, and (3) alleviating suffering. Challenges included distinguishing residents' suffering from that perceived by relatives or healthcare professionals, negotiating assessments with relatives and general practitioners (GPs), and uncertainties in the use of sedating medications - particularly morphine and midazolam. Strategies to address these challenges included 'double-checking' to validate symptom recognition, shared decision-making to 'get everyone on the same page' and align treatment goals, and the reliance on internal and external 'safety nets' (experienced colleagues and specialised palliative care services). Resource constraints such as personnel and financial resources, as well as beliefs and attitudes were reported to influence the management of unbearable suffering and the use of sedating medication.

Conclusions: RNs and HCAs in nursing homes face complex challenges when recognising, assessing and alleviating suffering with sedating medications. Ensuring safe and ethical practice requires sufficient staffing, adequate training, clear protocols, and access to specialised palliative care support. Without sufficient expertise, interprofessional collaboration, and shared decision-making, residents risk either inadequate relief of suffering or inappropriate sedation.

背景:在生命的尽头,病人经常经历痛苦的症状。当它们变得难治性时,可以使用镇静药物和姑息性镇静(PS)来减轻痛苦。PS主要在专业环境中实施,因为它需要明确的程序和指导方针。然而,关于注册护士(RNs)和保健助理(hca)如何处理养老院的难治性症状和难以忍受的痛苦,以及镇静药物如何在这种非专业环境中使用,人们知之甚少。本研究探讨了瑞士养老院的注册护士和hca如何识别、评估和减轻难以忍受的痛苦,他们面临的挑战,以及他们通过使用镇静药物和ps来减轻居民痛苦的策略。方法:本定性研究涉及瑞士德文版养老院的22名注册护士和6名hca。在2023年10月至2024年1月期间进行了7次半结构化焦点小组访谈,逐字记录,并使用扎根理论方法进行分析。结果:核心类别,“在疗养院缓和镇静导航-减轻痛苦和过度镇静之间的紧张”,被确定为三个子类:(1)认识痛苦,(2)评估痛苦,(3)减轻痛苦。挑战包括区分居民的痛苦与亲属或医疗保健专业人员所感知的痛苦,与亲属和全科医生(gp)协商评估,以及镇静药物使用的不确定性,特别是吗啡和咪达唑仑。应对这些挑战的战略包括“双重检查”以验证症状识别,共同决策以“让每个人都在同一页上”并协调治疗目标,以及依赖内部和外部“安全网”(经验丰富的同事和专门的姑息治疗服务)。据报告,人力和财政资源等资源限制以及信仰和态度影响了无法忍受的痛苦的管理和镇静药物的使用。结论:养老院的注册护士和hca在识别、评估和减轻镇静药物的痛苦方面面临着复杂的挑战。确保安全和合乎道德的做法需要足够的人员配备、充分的培训、明确的协议以及获得专门的姑息治疗支持。如果没有足够的专业知识、跨专业合作和共同决策,住院医生可能会面临痛苦缓解不足或镇静不当的风险。
{"title":"Recognising and alleviating unbearable suffering in residents living in Swiss nursing homes: a grounded theory study on nursing staff's perspectives on sedating medications and palliative sedation.","authors":"Maya Monteverde, Monica Fliedner, Eva Soom Ammann, Sandra Kunz, Charlotte Niederhauser, Julia Rehsmann","doi":"10.1186/s12904-025-01912-1","DOIUrl":"10.1186/s12904-025-01912-1","url":null,"abstract":"<p><strong>Background: </strong>At the end of life, patients frequently experience distressing symptoms. When they become refractory, sedating medications and palliative sedation (PS) may be used to alleviate suffering. PS is mainly practised in specialist settings, as it requires defined procedures and guidelines. Little is known, however, about how registered nurses (RNs) and healthcare assistants (HCAs) manage refractory symptoms and unbearable suffering in nursing homes and how sedating medications are used in this non-specialist setting. This study explored how RNs and HCAs in Swiss nursing homes recognise, assess, and alleviate unbearable suffering, the challenges they face, and the strategies they employ to alleviate residents' suffering by using sedating medications and PS.</p><p><strong>Methods: </strong>This qualitative study involved 22 RNs and six HCAs from nursing homes in German-speaking Switzerland. Seven semi-structured focus group interviews were conducted between October 2023 and January 2024, transcribed verbatim, and analysed using a grounded theory approach.</p><p><strong>Results: </strong>The core category, 'Navigating palliative sedation in nursing homes - tension between alleviating suffering and over-sedating', was identified, with three subcategories: (1) recognising suffering, (2) assessing suffering, and (3) alleviating suffering. Challenges included distinguishing residents' suffering from that perceived by relatives or healthcare professionals, negotiating assessments with relatives and general practitioners (GPs), and uncertainties in the use of sedating medications - particularly morphine and midazolam. Strategies to address these challenges included 'double-checking' to validate symptom recognition, shared decision-making to 'get everyone on the same page' and align treatment goals, and the reliance on internal and external 'safety nets' (experienced colleagues and specialised palliative care services). Resource constraints such as personnel and financial resources, as well as beliefs and attitudes were reported to influence the management of unbearable suffering and the use of sedating medication.</p><p><strong>Conclusions: </strong>RNs and HCAs in nursing homes face complex challenges when recognising, assessing and alleviating suffering with sedating medications. Ensuring safe and ethical practice requires sufficient staffing, adequate training, clear protocols, and access to specialised palliative care support. Without sufficient expertise, interprofessional collaboration, and shared decision-making, residents risk either inadequate relief of suffering or inappropriate sedation.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"24 1","pages":"272"},"PeriodicalIF":2.5,"publicationDate":"2025-10-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12560387/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145379519","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
Getting on "the same page": a qualitative study on strategies for healthcare professionals in cross-cultural communication about serious neurological illness. 在“同一页”上:关于严重神经系统疾病跨文化交流中医护人员策略的定性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2025-10-27 DOI: 10.1186/s12904-025-01917-w
Adela Wu, Karleen F Giannitrapani, Gabriela D Ruiz Colón, Karl A Lorenz

Background: Serious illness communication with racial and cultural discordance can be challenging for both patients and providers. Furthermore, patients with serious neurologic conditions may have deficits that affect communication and medical decision-making. We aimed to explore strategies for effective culturally-tailored communication and interpersonal relationship-building that multidisciplinary healthcare providers use to facilitate serious illness conversations with patients of diverse cultural backgrounds.

Methods: Using non-stratified purposive and snowball sampling, we conducted semi-structured interviews with 17 multidisciplinary providers, recruited from an academic tertiary care center, a Veterans Affairs hospital, and an academia-affiliated county hospital, who provide care for patients with serious neurologic conditions. We used inductive and deductive content analysis methods with dual review. We used inductive and deductive content analysis methods with dual review.

Results: We describe six strategies providers used to establish trust and rapport with diverse patients and families. Theme 1: Recognize and check personal biases about race and culture. Theme 2: Create sufficient time and space to build connection with patients and families. Theme 3: Ask direct, open-ended questions to gather clear information about lived experiences and establish rapport. Theme 4: Repeat information as necessary to ensure understanding and bi-directional engagement. Theme 5: Understand family structure and dynamics and involve family members in communication and decision-making. Theme 6: Partner with palliative care teams, interpreters and other hospital staff as well as individuals from outside the healthcare system.

Conclusions: High-quality care involves culturally-sensitive and tailored communication, which can be challenging for patients with neurocognitive deficits and limited abilities in communication and decision-making. Our study highlights six ways on how to establish rapport and improve cross-cultural serious illness communication with these diverse patients and families.

背景:与种族和文化不一致的严重疾病沟通对患者和提供者都是具有挑战性的。此外,患有严重神经系统疾病的患者可能存在影响沟通和医疗决策的缺陷。我们的目的是探索有效的文化定制沟通和人际关系建立策略,多学科医疗保健提供者使用这些策略来促进与不同文化背景的患者进行严重疾病对话。方法:采用非分层目的和滚雪球抽样,我们对17名多学科提供者进行了半结构化访谈,这些提供者来自一家学术性三级保健中心、一家退伍军人事务医院和一家学术性附属县医院,他们为严重神经系统疾病患者提供护理。我们采用归纳和演绎双重审查的内容分析方法。我们采用归纳和演绎双重审查的内容分析方法。结果:我们描述了六种策略提供者用来建立信任和不同的病人和家庭的关系。主题1:认识并检查个人对种族和文化的偏见。主题2:创造充足的时间和空间,建立与患者和家属的联系。主题3:问直接的、开放式的问题,收集关于生活经历的清晰信息,建立融洽的关系。主题4:重复必要的信息,以确保理解和双向参与。主题5:了解家庭结构和动态,让家庭成员参与沟通和决策。主题6:与姑息治疗小组、口译员和其他医院工作人员以及卫生保健系统外的个人合作。结论:高质量的护理涉及文化敏感和量身定制的沟通,这对于神经认知缺陷和沟通和决策能力有限的患者来说是一项挑战。我们的研究强调了如何与这些不同的患者和家庭建立融洽关系并改善跨文化重病沟通的六种方法。
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引用次数: 0
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BMC Palliative Care
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