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Building Palliative Care Capacity in North India: A Multicenter Approach. 在印度北部建立姑息治疗能力:多中心方法。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-27 DOI: 10.1016/j.jpainsymman.2025.10.018
Komal Kashyap, Brajesh Kumar Ratre, Vishwajeet Singh, Suraj Pal Singh, Varun Shekhar, Surabhi Shekhar, Priya Ramakrishnan, Abhishek Kandwal, Sweety Gupta, Kunal Jain, Rohit Lahori, Vanita Ahuja, Sukanya Mitra, Arshi Taj, Manoj Kamal, Nimisha Verma, Lalit Kumar Raiger, Seema Partani, Naveen Patidar, Anuja Pandit, Saurabh Vig, Hari Krishna Raju Sagiraju, Raghav Gupta, Prashant Sirohiya, Sanjeev Kumar, Neetu S Mahajan, Sushma Bhatnagar

Context: In low-resource settings like Northern India, palliative care providers often lack adequate training, institutional support, and interdisciplinary collaboration that are indispensable for effective implementation.

Objectives: This article highlights strategies to build palliative care capacity through education, interdisciplinary collaboration, and system-level interventions in Northern India. The article describes a palliative care capacity-building project executed from 2023 through 2025. It presents scalable approaches to overcome barriers to palliative care, enhance palliative care competencies, and expand palliative care infrastructure.

Material and method: The project proceeded in three phases and began with the selection and development of nine centers of excellence (Phase I), followed by associating each center with ten district hospitals to embed palliative care within the region (Phase II). Phase III focused on palliative care training for providers in 90 district hospitals. The project assessed capacity and quality improvements at the centers and evaluated providers' palliative care knowledge post-training in the district hospitals.

Results: The centers of excellence reported substantial capacity and continued improvements in palliative care delivery throughout the project. Physicians and nurses affiliated with the district hospital showed significant and lasting knowledge gains after palliative care training.

Conclusion: These results demonstrate significant progress in palliative care capacity with the region, but they, also, underscore the need for ongoing efforts in training, research, and systematic record-keeping. The project's success in its three phased approach illustrates the potential for education, collaboration, and system-level support to strengthen palliative care capacity.

背景:在印度北部等资源匮乏的环境中,姑息治疗提供者往往缺乏足够的培训、机构支持和跨学科合作,而这些都是有效实施所不可或缺的。目的:本文重点介绍了在印度北部通过教育、跨学科合作和系统级干预来建立姑息治疗能力的策略。文章描述了从2023年到2025年执行的姑息治疗能力建设项目。它提出了可扩展的方法来克服姑息治疗的障碍,提高姑息治疗能力,扩大姑息治疗基础设施。材料与方法:该项目分三个阶段进行,首先是选择和发展9个卓越中心(第一阶段),然后是将每个中心与10个地区医院联系起来,在该地区实施姑息治疗(第二阶段)。第三阶段的重点是对90家地区医院的医护人员进行姑息治疗培训。该项目评估了这些中心的能力和质量改进情况,并评估了地区医院提供人员培训后的姑息治疗知识。结果:在整个项目中,卓越中心报告了在姑息治疗提供方面的大量能力和持续改进。地区医院的医生和护士在接受姑息治疗培训后,获得了显著而持久的知识增益。结论:这些结果表明该地区在姑息治疗能力方面取得了重大进展,但也强调了在培训、研究和系统记录保存方面继续努力的必要性。该项目分三个阶段取得的成功表明,在加强姑息治疗能力方面,教育、合作和系统层面的支持具有潜力。
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引用次数: 0
Hysteresis Curves: Scalable Measures of Lagged Conversation Events for Communication Science. 迟滞曲线:通信科学中滞后会话事件的可伸缩测量。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-24 DOI: 10.1016/j.jpainsymman.2025.10.006
Advik M Dewoolkar, Kirsten Bonson, Donna M Rizzo, Robert Gramling
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引用次数: 0
Peaceful Acceptance of Illness Among Older Adults With Advanced Cancer: A Randomized Clinical Trial 老年晚期癌症患者对疾病的平和接受。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-23 DOI: 10.1016/j.jpainsymman.2025.10.007
Sule Yilmaz PHD , Elizabeth Gilbride BS , Sofiia Hryniv BS , William Consagra PHD , Supriya G. Mohile MD , Eva Culakova PHD , Beverly Canin , Arul Malhotra BS , Rachael Tylock MS , Judith O. Hopkins MD , Jane Jijun Liu MD , Jamil Khatri MD , Marissa LoCastro MD , Maya Anand BA , Allison Magnuson DO , Kah Poh Loh MBBCh BAO, MS

Context

Peaceful acceptance of illness is associated with lower psychological distress and increased engagement in advance care planning among adults with advanced cancer. Limited data exist on factors influencing illness acceptance in older adults.

Objectives

To examine patient, caregiver, and oncologist characteristics associated with peaceful acceptance of illness in older adults with advanced cancer.

Methods

A secondary analysis of a cluster-randomized trial evaluating the impact of geriatric assessment (GA) on cancer care in community oncology practices (NCT02107443). Participants included 333 patient-caregiver dyads. Patients were aged ≥70 years, had incurable stage III/IV solid tumors or lymphoma, and ≥1 GA impairment. Peaceful acceptance of illness was measured using the 5-item PEACE scale (range 5–20; higher scores indicate greater acceptance). Multivariable linear regression examined associations between PEACE scores and patient (e.g., GA impairments), caregiver (e.g., education), and oncologist factors (e.g., confidence).

Results

The mean (standard deviation, SD) age was 76.8 (5.4) years for patients and 66.6 (12.1) years for caregivers. Common cancers included lung (27%), gastrointestinal (26%), and genitourinary (16%). Mean (SD) PEACE score was 17.4 (2.5), indicating high illness acceptance. Lower acceptance was associated with psychological impairment (b = −0.92; 95% CI, −1.56 to −0.29), shorter patient-estimated life expectancy (b = −1.06; 95% CI, −2.06 to −0.06), and caregiver education ≤high school (b = 0.90; 95% CI, 0.32–1.49). No oncologist factors were significantly associated.

Conclusion

Patient psychological health, perceived prognosis, and caregiver education were linked to PEACE. Triadic interventions addressing these factors may enhance end-of-life care for older adults with advanced cancer.
背景:平和地接受疾病与晚期癌症患者较低的心理困扰和更多地参与提前护理计划有关。影响老年人疾病接受程度的因素数据有限。目的:探讨与老年晚期癌症患者平和接受疾病相关的患者、护理者和肿瘤学家特征。方法:对一项评估老年评估(GA)对社区肿瘤学实践中癌症护理影响的集群随机试验(NCT02107443)进行二次分析。参与者包括333对患者-护理者。患者年龄≥70岁,患有无法治愈的III/IV期实体瘤或淋巴瘤,GA损伤≥1。平和地接受疾病是用5项PEACE量表来衡量的(范围5-20;分数越高表示接受程度越高)。多变量线性回归检验了PEACE评分与患者(如GA损伤)、护理人员(如教育)和肿瘤学家因素(如信心)之间的关联。结果:患者的平均(标准差,SD)年龄为76.8(5.4)岁,护理人员的平均年龄为66.6(12.1)岁。常见的癌症包括肺癌(27%)、胃肠道(26%)和泌尿生殖系统(16%)。PEACE平均(SD)评分为17.4(2.5),表明疾病接受度高。较低的接受度与心理障碍(b=-0.92; 95% CI, -1.56至-0.29)、较短的患者预期寿命(b=-1.06; 95% CI, -2.06至-0.06)和护理者教育程度≤高中(b=0.90; 95% CI, 0.32至1.49)相关。没有肿瘤因素显著相关。结论:患者心理健康、感知预后和护理人员教育与PEACE有关。针对这些因素的三位一体干预可能会提高老年晚期癌症患者的临终关怀。
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引用次数: 0
Unused Opioids Following Palliative Care for Children at Home: A Missed Opportunity for Opioid Stewardship? 在家对儿童进行姑息治疗后未使用的阿片类药物:阿片类药物管理的错失机会?
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-23 DOI: 10.1016/j.jpainsymman.2025.10.011
Adam Rapoport MD, MHSc, FRCPC , Lara Navarro HBSc , Wendy Bordman BSP, BSc, RPh , Julia Mallen MD Candidate , Katherine E. Nelson MD, PhD , Kimberley Widger RN, PhD, CHPCN(C), FAAN, FCAN , Rebecca Williams MN, NP , Conor Mc Donnell MD, MB, BCh, BAO, FCARCSI

Context

Opioids are often a key component of compassionate end-of-life care for children at home. However, after a child dies, unused opioids pose a risk for misuse or diversion, thereby contributing to the ongoing opioid crisis.

Objectives

This exploratory study aimed to identify the prevalence and context of unused opioids in bereaved families’ homes to inform interventions to remove medications in a compassionate and timely manner.

Methods

Bereaved families whose child received palliative care from a tertiary hospital in Ontario, Canada, were invited to participate in an online survey if: 1) their child died at home between January 2020 and July 2024 (no less than 3 months prior to study commencement), 2) they had an email address on file, and 3) they did not require an English interpreter.

Results

Of 121 eligible families, 45 (37.2%) completed the survey. Thirty-four respondents (75.6%) reported having unused opioids in their home at the time of their child’s death, with 5 (14.7%) still in possession of opioids at the time of survey completion. Twenty-nine of 34 families (85.3%) disposed of all unused opioids, with 10 (34.4%) taking longer than a month to do so. Eighteen (62.1%) used a pharmacy “take-back” program, the recommended disposal method.

Conclusion

At the time of their child’s death, most families who responded to an online survey had unused opioids in their home, some of which remained in the home for an extended period, posing a risk for misuse. Disposal methods varied, revealing the need for a clear, streamlined process for safe disposal.
背景:阿片类药物通常是家庭对儿童进行富有同情心的临终关怀的关键组成部分。然而,在儿童死亡后,未使用的阿片类药物会造成滥用或转移的风险,从而加剧持续的阿片类药物危机。目的:本探索性研究旨在确定丧亲家庭中未使用阿片类药物的流行情况和背景,以便为干预措施提供信息,以富有同情心和及时的方式去除药物。方法:邀请在加拿大安大略省某三级医院接受姑息治疗的丧亲家庭参加一项在线调查,如果:(1)他们的孩子在2020年1月至2024年7月(不少于学习开始前3个月)在家中死亡,(2)他们有存档的电子邮件地址,(3)他们不需要英语翻译。结果:121个符合条件的家庭中,45个(37.2%)完成了调查。34名答复者(75.6%)报告说,在子女死亡时家中有未使用的阿片类药物,其中5名(14.7%)在调查完成时仍拥有阿片类药物。34个家庭中有29个(85.3%)处理了所有未使用的阿片类药物,其中10个(34.4%)需要超过一个月的时间才能完成。18名(62.1%)使用了药房的“回收”计划,这是推荐的处理方法。结论:在孩子死亡时,大多数回应在线调查的家庭家中都有未使用的阿片类药物,其中一些在家中停留了很长一段时间,造成了滥用的风险。处置方法多种多样,这表明需要一个清晰、简化的安全处置过程。
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引用次数: 0
Objectively Quantifying the Shrinking Worlds of People With Chronic Dyspnea: A National, Online Survey. 客观量化慢性呼吸困难患者不断缩小的世界:一项全国性的在线调查。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-23 DOI: 10.1016/j.jpainsymman.2025.10.013
David C Currow, Sungwon Chang, Janelle Yorke, Magnus Ekstrom, Slavica Kochovska, Vanessa Brunelli, Leanne Poulos, Jane L Phillips

Context: Chronic dyspnea is subjective but with objective (measurable) consequences. It is often poorly assessed because people have modified their lifestyles to avoid exertion that generates dyspnea.

Objectives: This study sought any relationship between respondents' self-reported long-term breathlessness limiting exertion (hereafter chronic dyspnea) and distance travelled from the room in which they slept, frequency of mobilizing, and any assistance required.

Methods: This was a national, cross-sectional, online survey of 10,033 Australian adults conducted using the Qualtrics platform, reflecting the most recent national census. Demographic data were collected in addition to the modified Medical Research Council (mMRC) breathlessness scale, duration of dyspnea in people with mMRC ≥ 1 and the Life-Space Assessment scores (0-120 with higher scores reflecting three factors combined: frequency with which a person moves from the room in which they sleep, the furthest distance they achieve and whether they need assistance to achieve this). A regression model adjusted for age, sex, rurality, socio-economic status, and smoking.

Results: A total of 8181 respondents had valid data: mean age 46.0 years (standard deviation ± 18.6); 29.3% mMRC ≥ 1, with more women reporting more intense dyspnea. Respiratory conditions were the most prevalent underlying cause. Using ANOVA, mean Life-Space Assessment scores reduced significantly as dyspnea increased (mMRC 0, 69.2; mMRC 1, 59.1; mMRC 2, 47.1; mMRC 3-4, 38.9; P < 0.0001). The regression model revealed an association (P < 0.001) between dyspnea and Life-Space Assessment scores decreasing from mMRC 0 by a mean of 9.3 (standard error [SE] 0.83) to mMRC 1; 20.3 (SE 1.2) to mMRC 2; and 27.9 (SE 1.8) to mMRC 3-4.

Discussion: Although potentially intuitive, this study quantified the association of people's reduced spatial footprints at each level of self-reported chronic dyspnea severity, reflecting their shrinking worlds.

慢性呼吸困难是主观的,但有客观的(可测量的)后果。由于人们已经改变了自己的生活方式,避免过度劳累而导致呼吸困难,因此对呼吸困难的评估往往很差。这项研究寻求受访者自我报告的长期呼吸困难限制运动(以下简称慢性呼吸困难)与他们离开睡眠房间的距离、活动频率和所需的任何帮助之间的关系。方法:这是一项全国性的、横断面的、在线调查,共有10033名澳大利亚成年人使用QualtricsR平台进行,反映了最近的全国人口普查。除了收集人口统计数据外,还收集了经修订的医学研究委员会(mMRC)呼吸困难量表、mMRC≥1的患者的呼吸困难持续时间和生命空间评估评分(0-120分,较高的评分反映了三个因素的综合:一个人从他们睡觉的房间移动的频率、他们达到的最远距离以及他们是否需要帮助才能达到这一点)。一个调整了年龄、性别、农村、社会经济地位和吸烟的回归模型。结果:有效资料8181人,平均年龄46.0岁(SD±18.6);29.3%的mMRC≥1,更多的女性报告更严重的呼吸困难。呼吸系统疾病是最普遍的潜在原因。使用方差分析,随着呼吸困难的增加,平均生活空间评估得分显著降低(mMRC0, 69.2; mMRC1, 59.1; mMRC2, 47.1; mMRC3-4 38.9)。讨论:虽然可能是直观的,但本研究量化了人们在自我报告的慢性呼吸困难严重程度的各个水平上减少空间足迹的关联,反映了他们缩小的世界。
{"title":"Objectively Quantifying the Shrinking Worlds of People With Chronic Dyspnea: A National, Online Survey.","authors":"David C Currow, Sungwon Chang, Janelle Yorke, Magnus Ekstrom, Slavica Kochovska, Vanessa Brunelli, Leanne Poulos, Jane L Phillips","doi":"10.1016/j.jpainsymman.2025.10.013","DOIUrl":"10.1016/j.jpainsymman.2025.10.013","url":null,"abstract":"<p><strong>Context: </strong>Chronic dyspnea is subjective but with objective (measurable) consequences. It is often poorly assessed because people have modified their lifestyles to avoid exertion that generates dyspnea.</p><p><strong>Objectives: </strong>This study sought any relationship between respondents' self-reported long-term breathlessness limiting exertion (hereafter chronic dyspnea) and distance travelled from the room in which they slept, frequency of mobilizing, and any assistance required.</p><p><strong>Methods: </strong>This was a national, cross-sectional, online survey of 10,033 Australian adults conducted using the Qualtrics platform, reflecting the most recent national census. Demographic data were collected in addition to the modified Medical Research Council (mMRC) breathlessness scale, duration of dyspnea in people with mMRC ≥ 1 and the Life-Space Assessment scores (0-120 with higher scores reflecting three factors combined: frequency with which a person moves from the room in which they sleep, the furthest distance they achieve and whether they need assistance to achieve this). A regression model adjusted for age, sex, rurality, socio-economic status, and smoking.</p><p><strong>Results: </strong>A total of 8181 respondents had valid data: mean age 46.0 years (standard deviation ± 18.6); 29.3% mMRC ≥ 1, with more women reporting more intense dyspnea. Respiratory conditions were the most prevalent underlying cause. Using ANOVA, mean Life-Space Assessment scores reduced significantly as dyspnea increased (mMRC 0, 69.2; mMRC 1, 59.1; mMRC 2, 47.1; mMRC 3-4, 38.9; P < 0.0001). The regression model revealed an association (P < 0.001) between dyspnea and Life-Space Assessment scores decreasing from mMRC 0 by a mean of 9.3 (standard error [SE] 0.83) to mMRC 1; 20.3 (SE 1.2) to mMRC 2; and 27.9 (SE 1.8) to mMRC 3-4.</p><p><strong>Discussion: </strong>Although potentially intuitive, this study quantified the association of people's reduced spatial footprints at each level of self-reported chronic dyspnea severity, reflecting their shrinking worlds.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145370297","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
Information Meetings Stimulate Older People to Talk About Their Wishes at the End of Life 信息会议鼓励老年人谈论他们在生命结束时的愿望。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-22 DOI: 10.1016/j.jpainsymman.2025.10.005
Tessa D. Bergman MSc, MA, Annicka G.M. van der Plas PhD, H. Roeline W. Pasman PhD, Bregje D. Onwuteaka-Philipsen PhD

Context

Information meetings aim to inform older people about end-of-life care, and prepare for advance care planning (ACP). Meetings are organized by general practitioners (GPs) inviting their patients or by other organizations targeting older people in general.

Objectives

To assess whether information meetings stimulate ACP (conversations with relatives, healthcare professionals, and documentation), and whether the type of meeting (GP versus other) and attendees’ characteristics were associated with having ACP conversations with the GP in response to the meeting.

Methods

A prepost interventional study with questionnaires immediately before (T0) and six months after (T2) the information meeting. 98 information meetings were organized (53 by GPs; 45 by other organizations). Older people attended a meeting and filled out questionnaires at T0 (N = 1917) and T2 (N = 1088). Descriptive statistics and logistic regression analyses were done.

Results

At T2, 26.4% of attendees had had an ACP conversation with their GP in response to the information meeting. Further, more older people had documented (T0: 39%; T2: 53%) and discussed their wishes with relatives (T0: 61%; T2: 84%) at T2. ACP engagement with GPs did not differ between GP or other meetings. Age (OR 1.05), non-Dutch background (OR 2.41), religiosity (OR 0.68) and previously having discussed end-of-life topics with a physician (OR 2.37) were associated with having ACP conversations with GPs.

Conclusions

Information meetings about end-of-life care stimulate older people to have ACP conversations with their GP and with relatives and to document wishes. The type of meeting, by GPs or others, does not affect ACP conversations with their GP.
背景:信息会议的目的是告知老年人关于临终关怀,并为提前护理计划(ACP)做准备。会议由全科医生(gp)邀请他们的病人或其他针对老年人的组织组织。目的:评估信息会议是否刺激ACP(与亲属、医疗保健专业人员和文件的对话),以及会议类型(全科医生与其他)和与会者的特征是否与会议后与全科医生进行ACP对话有关。方法:采用介入前、介入后问卷调查法,于介入前、介入后6个月进行问卷调查。举办了98次新闻会议(53次由普通科医生举行;45次由其他组织举行)。老年人参加会议并在T0 (N=1,917)和T2 (N=1,088)填写问卷。描述性统计和逻辑回归分析。结果:在T2时,26.4%的参与者与他们的GP进行了ACP对话,作为对信息会议的回应。此外,更多的老年人在T2时与亲属记录(T0: 39%; T2: 53%)并讨论他们的愿望(T0: 61%; T2: 84%)。ACP与全科医生的接触在全科医生会议或其他会议之间没有区别。年龄(OR 1.05)、非荷兰背景(OR 2.41)、宗教信仰(OR 0.68)以及之前与医生讨论过临终话题(OR 2.38)与与全科医生进行ACP对话相关。结论:临终关怀信息会促进老年人与全科医生和亲属进行ACP对话,并记录意愿。全科医生或其他人的会议类型不会影响ACP与其全科医生的对话。
{"title":"Information Meetings Stimulate Older People to Talk About Their Wishes at the End of Life","authors":"Tessa D. Bergman MSc, MA,&nbsp;Annicka G.M. van der Plas PhD,&nbsp;H. Roeline W. Pasman PhD,&nbsp;Bregje D. Onwuteaka-Philipsen PhD","doi":"10.1016/j.jpainsymman.2025.10.005","DOIUrl":"10.1016/j.jpainsymman.2025.10.005","url":null,"abstract":"<div><h3>Context</h3><div>Information meetings aim to inform older people about end-of-life care, and prepare for advance care planning (ACP). Meetings are organized by general practitioners (GPs) inviting their patients or by other organizations targeting older people in general.</div></div><div><h3>Objectives</h3><div>To assess whether information meetings stimulate ACP (conversations with relatives, healthcare professionals, and documentation), and whether the type of meeting (GP versus other) and attendees’ characteristics were associated with having ACP conversations with the GP in response to the meeting.</div></div><div><h3>Methods</h3><div>A prepost interventional study with questionnaires immediately before (T0) and six months after (T2) the information meeting. 98 information meetings were organized (53 by GPs; 45 by other organizations). Older people attended a meeting and filled out questionnaires at T0 (<em>N</em> = 1917) and T2 (<em>N</em> = 1088). Descriptive statistics and logistic regression analyses were done.</div></div><div><h3>Results</h3><div>At T2, 26.4% of attendees had had an ACP conversation with their GP in response to the information meeting. Further, more older people had documented (T0: 39%; T2: 53%) and discussed their wishes with relatives (T0: 61%; T2: 84%) at T2. ACP engagement with GPs did not differ between GP or other meetings. Age (OR 1.05), non-Dutch background (OR 2.41), religiosity (OR 0.68) and previously having discussed end-of-life topics with a physician (OR 2.37) were associated with having ACP conversations with GPs.</div></div><div><h3>Conclusions</h3><div>Information meetings about end-of-life care stimulate older people to have ACP conversations with their GP and with relatives and to document wishes. The type of meeting, by GPs or others, does not affect ACP conversations with their GP.</div></div>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":"71 1","pages":"Pages 190-199"},"PeriodicalIF":3.5,"publicationDate":"2025-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145368203","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
A Kid at Heart: Applying Pediatric Skills to Caring for Adults. 一个孩子的心:应用儿科技能照顾成年人。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-22 DOI: 10.1016/j.jpainsymman.2025.10.008
Annie Laurie Gula, Rebecca E MacDonell-Yilmaz, Dana Guyer
{"title":"A Kid at Heart: Applying Pediatric Skills to Caring for Adults.","authors":"Annie Laurie Gula, Rebecca E MacDonell-Yilmaz, Dana Guyer","doi":"10.1016/j.jpainsymman.2025.10.008","DOIUrl":"10.1016/j.jpainsymman.2025.10.008","url":null,"abstract":"","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145355087","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
Adaptation of a Serious Illness Communication Training Intervention for the Rwandan Context. 适应卢旺达情况的严重疾病交流培训干预。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-22 DOI: 10.1016/j.jpainsymman.2025.10.010
Rebecca J DeBoer, Pacifique Uwamahoro, Diane Andrea Ndoli, Eulade Rugengamanzi, Augustin Mulindabigwi, Jean Bosco Bigirimana, Tumusime Musafiri, Sarah E Slater, Katherine Van Loon, Rebecca L Sudore, Wendy G Anderson, Justin J Sanders, Vincent K Cubaka

Context: Communication skills are essential in cancer care, and international guidelines recommend communication training for all cancer care providers. Both clinical communication and training methods are influenced by culture. As oncology and palliative care expand globally, procedures are needed to adapt evidence-based communication training for diverse contexts.

Objective: To adapt a serious illness communication training intervention in Rwanda.

Methods: Guided by the Cultural Adaptation Process model, we conducted focus groups to understand communication training needs and gather feedback on a U.S. tool, the Serious Illness Conversation Guide (SICG). Based on identified needs, we made initial adaptations to an SICG-based training, incorporating tools from another U.S. program (VitalTalk). We piloted this training with 14 clinical psychologists, using lecture, demonstration, scripted roleplay, and small group discussion. Effectiveness was assessed through 5-point scales and qualitative feedback.

Results: Seventeen interdisciplinary oncology providers participated in one of three focus groups. While some had received lectures on communication, all believed additional training is needed. They endorsed the approach of adapting an international program rather than creating a Rwandan training de novo. Based on their input, we adapted and piloted a training that focused on three skills: 1) Set up the conversation and assess understanding; 2) Share information via a succinct "headline;" 3) Respond to emotion. Training methods received mean scores of 4.0 to 4.33 (5 = most effective). Further modifications were suggested to improve cultural concordance.

Conclusion: Despite vast cultural differences, communication training interventions developed in the U.S. can be effectively adapted in African contexts through co-creation with local providers.

背景:沟通技巧在癌症治疗中是必不可少的,国际指南建议对所有癌症治疗提供者进行沟通培训。临床交流和培训方式都受到文化的影响。随着肿瘤学和姑息治疗在全球范围内的扩展,需要制定程序,使循证沟通培训适应不同的情况。目的:在卢旺达实施大病沟通培训干预。方法:在文化适应过程模型的指导下,我们进行了焦点小组,以了解沟通培训需求,并收集对美国工具——严重疾病对话指南(SICG)的反馈。根据确定的需求,我们对基于sicg的培训进行了初步调整,并结合了另一个美国项目(VitalTalk)的工具。我们对14名临床心理学家进行了试点培训,采用讲座、示范、脚本角色扮演和小组讨论的方式。通过5分制量表和定性反馈评估有效性。结果:17名跨学科肿瘤学提供者参加了三个焦点小组。虽然有些人接受了交流方面的讲座,但所有人都认为需要额外的培训。他们赞同调整一项国际方案的办法,而不是创建一项卢旺达培训新方案。根据他们的意见,我们调整并试行了一项培训,重点是三项技能:1)建立对话并评估理解程度;2)通过简洁的“标题”分享信息;3)对情绪做出反应。训练方法的平均得分为4.0 ~ 4.33分(5分=最有效)。建议进一步修改以提高文化一致性。结论:尽管存在巨大的文化差异,但通过与当地供应商共同创造,美国开发的沟通培训干预措施可以有效地适用于非洲环境。
{"title":"Adaptation of a Serious Illness Communication Training Intervention for the Rwandan Context.","authors":"Rebecca J DeBoer, Pacifique Uwamahoro, Diane Andrea Ndoli, Eulade Rugengamanzi, Augustin Mulindabigwi, Jean Bosco Bigirimana, Tumusime Musafiri, Sarah E Slater, Katherine Van Loon, Rebecca L Sudore, Wendy G Anderson, Justin J Sanders, Vincent K Cubaka","doi":"10.1016/j.jpainsymman.2025.10.010","DOIUrl":"10.1016/j.jpainsymman.2025.10.010","url":null,"abstract":"<p><strong>Context: </strong>Communication skills are essential in cancer care, and international guidelines recommend communication training for all cancer care providers. Both clinical communication and training methods are influenced by culture. As oncology and palliative care expand globally, procedures are needed to adapt evidence-based communication training for diverse contexts.</p><p><strong>Objective: </strong>To adapt a serious illness communication training intervention in Rwanda.</p><p><strong>Methods: </strong>Guided by the Cultural Adaptation Process model, we conducted focus groups to understand communication training needs and gather feedback on a U.S. tool, the Serious Illness Conversation Guide (SICG). Based on identified needs, we made initial adaptations to an SICG-based training, incorporating tools from another U.S. program (VitalTalk). We piloted this training with 14 clinical psychologists, using lecture, demonstration, scripted roleplay, and small group discussion. Effectiveness was assessed through 5-point scales and qualitative feedback.</p><p><strong>Results: </strong>Seventeen interdisciplinary oncology providers participated in one of three focus groups. While some had received lectures on communication, all believed additional training is needed. They endorsed the approach of adapting an international program rather than creating a Rwandan training de novo. Based on their input, we adapted and piloted a training that focused on three skills: 1) Set up the conversation and assess understanding; 2) Share information via a succinct \"headline;\" 3) Respond to emotion. Training methods received mean scores of 4.0 to 4.33 (5 = most effective). Further modifications were suggested to improve cultural concordance.</p><p><strong>Conclusion: </strong>Despite vast cultural differences, communication training interventions developed in the U.S. can be effectively adapted in African contexts through co-creation with local providers.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12702458/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145368211","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
Spiritual Status and Quality of Life in Hospice Family Caregivers: A Cross-Sectional Study. 安宁疗护家庭照护者精神状态与生活品质之横断面研究。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-20 DOI: 10.1016/j.jpainsymman.2025.10.012
Dong Wook Chun, Youngmin Park, In Cheol Hwang, Hong Yup Ahn

Context: Family caregivers (FCs) of terminally ill cancer patients face substantial strain that can impair quality of life (QoL). However, how spiritual status affects QoL, and whether these relationships differ by religious affiliation, remains unclear.

Objectives: This study examines the association between spiritual status and QoL among FCs of terminally ill cancer patients METHODS: A cross-sectional survey was conducted at nine hospice care units in South Korea (n = 170 FCs). Spiritual status was addressed using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being questionnaire (FACIT-Sp-12) and three self-rated questions that addressed spirituality, religiosity, and spiritual pain. QoL was measured using the Korean version of the Caregiver Quality of Life Index-Cancer (CQOLC-K) questionnaire. Multivariate regression analysis, adjusted for covariates via stepwise selection, was used to examine the associations between spiritual variables and CQOLC-K total and each subscale.

Results: In adjusted analyses, Positive Adaptation was the only CQOLC-K subscale associated with all spiritual measures, including Meaning/peace, Faith of FACIT-Sp-12, self-rated spirituality, religiosity, and spiritual pain. No consistent independent association was observed with the CQOLC-K total. In stratified models, these associations were confined to caregivers with a religious affiliation. Spiritual pain showed subgroup-specific patterns: among religious caregivers it coexisted with higher positive adaptation and greater burden, while among non-religious caregivers it was related to worse financial concerns.

Conclusion: In this cohort, spirituality aligned with domain-specific adaptation, and this linkage was limited to caregivers with a religious affiliation. Brief screening for spiritual pain and religious affiliation may help tailor meaning-focused or practical support accordingly.

目的:探讨晚期癌症患者家属照护者精神状态与生活质量的关系。材料与方法:横断面调查在韩国9个临终关怀单位进行(n=170 fc)。使用慢性疾病治疗功能评估-精神健康问卷(FACIT-Sp-12)和三个关于灵性、宗教信仰和精神痛苦的自评问题来解决精神状态。生活质量使用韩国版护理者生活质量指数-癌症(CQOLC-K)问卷进行测量。采用多元回归分析,通过逐步选择调整协变量,检验精神变量与CQOLC-K总分和各子量表之间的关系。结果:在调整分析中,积极适应是唯一与所有精神测量相关的CQOLC-K子量表,包括意义/和平,FACIT-Sp-12的信仰,自评灵性,宗教虔诚和精神痛苦。没有观察到与CQOLC-K总值一致的独立关联。在分层模型中,这些关联仅限于有宗教信仰的看护者。精神痛苦表现出亚群体特异性模式:在宗教照顾者中,精神痛苦与较高的积极适应和更大的负担并存,而在非宗教照顾者中,精神痛苦与较差的经济担忧相关。结论:在这个队列中,灵性与特定领域的适应一致,并且这种联系仅限于具有宗教信仰的护理人员。简短的筛选,记录一个项目的精神痛苦和宗教信仰的存在可能有助于确定有宗教信仰的照顾者,他们将受益于以意义为中心的精神支持,而没有宗教信仰的照顾者可能从实际和经济援助中受益更多。
{"title":"Spiritual Status and Quality of Life in Hospice Family Caregivers: A Cross-Sectional Study.","authors":"Dong Wook Chun, Youngmin Park, In Cheol Hwang, Hong Yup Ahn","doi":"10.1016/j.jpainsymman.2025.10.012","DOIUrl":"10.1016/j.jpainsymman.2025.10.012","url":null,"abstract":"<p><strong>Context: </strong>Family caregivers (FCs) of terminally ill cancer patients face substantial strain that can impair quality of life (QoL). However, how spiritual status affects QoL, and whether these relationships differ by religious affiliation, remains unclear.</p><p><strong>Objectives: </strong>This study examines the association between spiritual status and QoL among FCs of terminally ill cancer patients METHODS: A cross-sectional survey was conducted at nine hospice care units in South Korea (n = 170 FCs). Spiritual status was addressed using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being questionnaire (FACIT-Sp-12) and three self-rated questions that addressed spirituality, religiosity, and spiritual pain. QoL was measured using the Korean version of the Caregiver Quality of Life Index-Cancer (CQOLC-K) questionnaire. Multivariate regression analysis, adjusted for covariates via stepwise selection, was used to examine the associations between spiritual variables and CQOLC-K total and each subscale.</p><p><strong>Results: </strong>In adjusted analyses, Positive Adaptation was the only CQOLC-K subscale associated with all spiritual measures, including Meaning/peace, Faith of FACIT-Sp-12, self-rated spirituality, religiosity, and spiritual pain. No consistent independent association was observed with the CQOLC-K total. In stratified models, these associations were confined to caregivers with a religious affiliation. Spiritual pain showed subgroup-specific patterns: among religious caregivers it coexisted with higher positive adaptation and greater burden, while among non-religious caregivers it was related to worse financial concerns.</p><p><strong>Conclusion: </strong>In this cohort, spirituality aligned with domain-specific adaptation, and this linkage was limited to caregivers with a religious affiliation. Brief screening for spiritual pain and religious affiliation may help tailor meaning-focused or practical support accordingly.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145337202","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
"Between Universes:" Moral Distress in Delivering Culturally Attuned Care to South Asian Breast Cancer Survivors. “宇宙之间:为南亚乳腺癌幸存者提供文化协调护理的道德困境”。
IF 3.5 2区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2025-10-14 DOI: 10.1016/j.jpainsymman.2025.09.013
Ranak Trivedi, Nathan Tran, Veena Manja, Nainwant Singh, Shreya Desai, Lidia Schapira, Dolores Gallagher-Thompson, Steven M Asch, Karl Lorenz

Context: Even as health care institutions seek to promote culturally attuned care, clinicians may struggle when cultural norms and practices contradict established clinical practices.

Objectives: To explore sources of moral distress among clinicians treating the growing population of South Asian breast cancer survivors.

Methods: We report secondary analyses from a mixed methods study that aimed to understand the barriers and facilitators to providing culturally attuned care to South Asian breast cancer survivors. We conducted 30-minute virtual semi-structured interviews with multidisciplinary clinicians involved in cancer care. Interviews were guided by the Consolidated Framework of Implementation Research (CFIR). For this study, we used a thematic analysis approach to examine the sources of moral distress, and potential solutions to address it.

Results: 14 clinicians (8 physicians; 41.6 ± 9.8 years; 9 women; 4 South Asian) were interviewed. We identified the following themes: 1) Clinicians experienced moral distress when South Asian cultural norms conflicted with pillars of biomedical ethics; 2) Moral distress was exacerbated by individual and system-level barriers; and, 3) Solutions may necessitate change across individual, inner setting (e.g., clinics), and outer setting (e.g., health care systems) domains of CFIR.

Conclusions: Clinicians may experience moral distress when their evidence-based and ethical care approaches conflict with cultural norms. Health care systems should provide programs that support clinicians who encounter these dilemmas to ensure high quality clinical care that respects the cultural norms of South Asian breast cancer survivors.

背景:即使卫生保健机构寻求促进文化协调的护理,当文化规范和实践与既定的临床实践相矛盾时,临床医生可能会挣扎。目的:探讨临床医生在治疗不断增长的南亚乳腺癌幸存者人群中道德困扰的来源。方法:我们报告了一项混合方法研究的二次分析,旨在了解为南亚乳腺癌幸存者提供文化协调护理的障碍和促进因素。我们与参与癌症治疗的多学科临床医生进行了30分钟的虚拟半结构化访谈。访谈以实施研究综合框架(CFIR)为指导。在这项研究中,我们使用主题分析方法来检查道德困境的来源,以及解决它的潜在解决方案。结果:共访谈14名临床医生(医师8名,年龄41.6±9.8岁,女性9名,南亚4名)。我们确定了以下主题:1)当南亚文化规范与生物医学伦理支柱发生冲突时,临床医生经历了道德困境;个体和制度层面的障碍加剧了道德困境;3)解决方案可能需要在CFIR的个人、内部环境(如诊所)和外部环境(如卫生保健系统)领域进行改变。结论:当临床医生的循证和伦理护理方法与文化规范发生冲突时,他们可能会经历道德困扰。卫生保健系统应提供方案,支持遇到这些困境的临床医生,以确保高质量的临床护理,尊重南亚乳腺癌幸存者的文化规范。
{"title":"\"Between Universes:\" Moral Distress in Delivering Culturally Attuned Care to South Asian Breast Cancer Survivors.","authors":"Ranak Trivedi, Nathan Tran, Veena Manja, Nainwant Singh, Shreya Desai, Lidia Schapira, Dolores Gallagher-Thompson, Steven M Asch, Karl Lorenz","doi":"10.1016/j.jpainsymman.2025.09.013","DOIUrl":"10.1016/j.jpainsymman.2025.09.013","url":null,"abstract":"<p><strong>Context: </strong>Even as health care institutions seek to promote culturally attuned care, clinicians may struggle when cultural norms and practices contradict established clinical practices.</p><p><strong>Objectives: </strong>To explore sources of moral distress among clinicians treating the growing population of South Asian breast cancer survivors.</p><p><strong>Methods: </strong>We report secondary analyses from a mixed methods study that aimed to understand the barriers and facilitators to providing culturally attuned care to South Asian breast cancer survivors. We conducted 30-minute virtual semi-structured interviews with multidisciplinary clinicians involved in cancer care. Interviews were guided by the Consolidated Framework of Implementation Research (CFIR). For this study, we used a thematic analysis approach to examine the sources of moral distress, and potential solutions to address it.</p><p><strong>Results: </strong>14 clinicians (8 physicians; 41.6 ± 9.8 years; 9 women; 4 South Asian) were interviewed. We identified the following themes: 1) Clinicians experienced moral distress when South Asian cultural norms conflicted with pillars of biomedical ethics; 2) Moral distress was exacerbated by individual and system-level barriers; and, 3) Solutions may necessitate change across individual, inner setting (e.g., clinics), and outer setting (e.g., health care systems) domains of CFIR.</p><p><strong>Conclusions: </strong>Clinicians may experience moral distress when their evidence-based and ethical care approaches conflict with cultural norms. Health care systems should provide programs that support clinicians who encounter these dilemmas to ensure high quality clinical care that respects the cultural norms of South Asian breast cancer survivors.</p>","PeriodicalId":16634,"journal":{"name":"Journal of pain and symptom management","volume":" ","pages":""},"PeriodicalIF":3.5,"publicationDate":"2025-10-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145308280","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
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Journal of pain and symptom management
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