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Existential suffering as an indication for palliative sedation: Identifying and addressing challenges. 将存在的痛苦作为姑息镇静的适应症:确定并应对挑战。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951524000336
Columba Thomas, Julia D Kulikowksi, William Breitbart, Yesne Alici, Eduardo Bruera, Liz Blackler, Daniel P Sulmasy
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引用次数: 0
Vacancies. 职位空缺。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951524000154
Christopher Kim
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引用次数: 0
Terminal lucidity. 终端清醒。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951523001748
Tarek Zieneldien
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引用次数: 0
Web-based support for spouses of patients with life-threatening illness cared for in specialized home care - A feasibility study. 为接受专门家庭护理的危重病人配偶提供网络支持--一项可行性研究。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951522001602
Louise Häger Tibell, Anette Alvariza, Ulrika Kreicbergs, Viktoria Wallin, Gunnar Steineck, Maja Holm

Objectives: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

Methods: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

Results: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

Significance of results: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

目标:针对家庭照护者的心理教育干预已被证明是有效的,但并非所有照护者都能参加;因此,基于网络的干预可能是一种补充。本研究旨在从接受专业家庭护理的患者配偶的角度评估基于网络的干预措施 "narstaende.se "的可行性:方法:开发了一个网站,其中包含医护人员和家庭护理人员(演员)之间的对话视频、信息文本、更多信息链接和聊天论坛。网站的目的是为护理和死亡提供支持和促进准备工作,其内容以理论和经验为基础。该研究采用描述性横截面设计。共有 26 名配偶在访问网站前回答了问卷,4 周后,12 名配偶接受了访谈。研究采用了描述性统计和定性内容分析:结果:配偶们认为该网站易于使用、界面友好、内容相关。参与调查的配偶会向其他有类似情况的人推荐 "narstaende.se",大多数人认为网站介绍得很及时。视频似乎很容易访问,而且使用率最高,有助于产生认同感并分享情况。在线形式被认为是灵活的,但并非所有配偶都访问了网站,他们表示希望在现实生活中得到支持:结果的意义:基于网络的干预措施对于专业家庭护理的配偶来说是可行的,但数字形式并不适合所有人。还需要进一步研究,以确定该网站在为一般家庭照顾者提供支持和提高准备程度方面的潜力。
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引用次数: 0
Precision medicine. 精准医疗。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951524000075
Tarek Zieneldien
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引用次数: 0
Virtual reality and neurofeedback as a supportive approach to managing cancer symptoms for patients receiving treatment: A brief report of a feasibility trial. 虚拟现实和神经反馈作为一种辅助方法,帮助接受治疗的患者控制癌症症状:可行性试验简要报告。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-08-01 DOI: 10.1017/S1478951524000385
Abigail J Rolbiecki, Brett Froeliger, Jamie Smith, Jun Ying, Shannon Canfield, Kayla Posley, Megan Polniak, Dana Dotson

Objectives: Managing cancer symptoms while patients receive systemic treatment remains a challenge in oncology. The use of complementary and alternative medicine (CAM) approaches like virtual reality (VR) and neurofeedback (NF) in tandem with systemic treatment might reduce symptom burden for patients. The combination of VR + NF as a CAM intervention approach is novel and understudied, particularly as it relates to supportive cancer care. The purpose of this study is to summarize our VR + NF study protocol and share preliminary results regarding study retention (across 2 treatment sessions) and preliminary impact of VR or VR + NF on patient-reported outcomes such as anxiety and pain.

Methods: We utilized a parallel arm trial design to compare preliminary impact of VR only and VR + NF on cancer symptoms among patients who are actively receiving cancer treatment.

Results: Sixty-seven percent (n = 20) of participants returned to participate in a second VR session, and the rates of return were the same between the VR groups. Patients in the VR + NF group showed improvements in anxiety after both sessions, while patients in the VR only group showed significant improvements in pain and depression after both sessions. Patients in the VR + NF group showed improved pain after session 1.

Significance of results: This study demonstrates that patients can be retained over multiple treatment sessions and that VR and NF remain promising treatment approaches with regard to impact on patient-reported outcomes like anxiety and pain.

目的:在患者接受系统治疗的同时控制癌症症状仍然是肿瘤学领域的一项挑战。使用虚拟现实(VR)和神经反馈(NF)等补充和替代医学(CAM)方法配合系统治疗可减轻患者的症状负担。将虚拟现实和神经反馈结合起来作为一种 CAM 干预方法,是一种新颖的方法,而且研究不足,尤其是在癌症支持性护理方面。本研究的目的是总结我们的 VR + NF 研究方案,并分享有关研究保留率(2 个疗程)的初步结果,以及 VR 或 VR + NF 对患者报告结果(如焦虑和疼痛)的初步影响:我们采用平行臂试验设计,比较仅使用 VR 和 VR + NF 对正在接受癌症治疗的患者的癌症症状的初步影响:67%的参与者(n = 20)返回参加第二次 VR 体验,VR 组之间的返回率相同。两次治疗后,VR + NF 组患者的焦虑情绪均有所改善,而仅 VR 组患者的疼痛和抑郁情绪均有显著改善。结果的意义:这项研究表明,患者可以在多个疗程中继续接受治疗,而且就对焦虑和疼痛等患者报告结果的影响而言,VR 和 NF 仍是很有前景的治疗方法。
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引用次数: 0
The need for integration of emotional intelligence and spirituality training in medical and nursing education curriculum. 在医学和护理教育课程中融入情商和灵性培训的必要性。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-07-19 DOI: 10.1017/S1478951524001019
Lena Marianti, Rikas Saputra, Kadek Suhardita, Paramita Nuraini
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引用次数: 0
Identifying the active content of interventions targeting the psychological well-being of carers of people with motor neuron disease: A systematic review. 确定针对运动神经元病患者照顾者心理健康的干预措施的积极内容:系统综述。
IF 2.2 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-06-03 DOI: 10.1017/S1478951524000877
Paul Cafarella, Tanja Effing, Anna Chur-Hansen

Objectives: The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness of interventions targeting the PWB of MND carers could be better explained through improved characterization of the active content of these interventions.

Methods: Mixed-methods systematic review based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Content-coding of interventions targeting the PWB of MND carers using BCTTv1 was conducted.

Results: Sixteen manuscripts describing 14 studies were included. Forty-one of the possible 93 behavior change techniques (BCTs, 44%) were identified as active ingredients, while 52 BCTs (56%) were absent. BCTs were identified in all 14 intervention groups and 4 control groups. Four of the 16 overall BCTTv1 categories were absent. Eleven of the 14 studies demonstrated PWB benefits from their interventions.

Significance of results: Identified and absent BCTs and BCTTv1 categories were mapped for all study groups, enabling a transparent characterization of active intervention content associated with positive PWB outcomes. Directions to improve interventions in this nascent field of research included the investigation of relevant untested BCTs in this population and the management of reporting and methodological quality issues.

研究目的本研究的主要目的是使用行为改变技术分类法(BCTTv1)来识别、绘制和描述评估运动神经元疾病(MND)照护者心理健康(PWB)的研究中干预组和比较组的活性成分。次要目的是:(a) 识别不存在的活性成分;(b) 探讨是否可以通过改进这些干预措施活性成分的特征,更好地解释针对 MND 照护者的心理健康干预效果的差异性:根据乔安娜-布里格斯研究所(Joanna Briggs Institute)的定量、定性和混合方法综述方法以及《系统综述和元分析首选报告项目》指南进行混合方法系统综述。使用 BCTTv1 对针对 MND 照护者的 PWB 干预措施进行了内容编码:结果:共纳入 16 篇手稿,描述了 14 项研究。在可能的 93 种行为改变技术(BCT,44%)中,有 41 种被确定为有效成分,有 52 种(56%)没有被确定为有效成分。在所有 14 个干预组和 4 个对照组中都发现了 BCT。在 16 个总体 BCTTv1 类别中,有 4 个不存在。在 14 项研究中,有 11 项研究表明其干预措施对残疾人有益:结果的意义:为所有研究小组绘制了已识别和未识别的BCTs和BCTTv1类别,从而对与积极的公共福利机构结果相关的积极干预内容进行了透明的描述。改进这一新兴研究领域干预措施的方向包括调查这一人群中未经测试的相关BCTs,以及管理报告和方法质量问题。
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引用次数: 0
Increasing the scope of virtual reality in palliative care: Insights and future directions. 扩大虚拟现实技术在姑息治疗中的应用范围:洞察力与未来方向。
IF 2.2 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-06-03 DOI: 10.1017/S147895152400097X
Lena Marianti, Rikas Saputra, Arizona, Siti Arifah, Hartika Utami Fitri, Bela Janare Putra
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引用次数: 0
Deathbed experiences and meaning-making: Perspectives of family caregivers of patients who received cancer palliative care. 临终体验与意义建构:接受癌症姑息治疗病人的家庭护理者的观点。
IF 1.9 4区 医学 Q3 HEALTH POLICY & SERVICES Pub Date : 2024-06-01 DOI: 10.1017/S1478951523001670
Irene Teo, Keerthana Paramasivam, Wai Yee Chee, Carolyn Ng, Patricia Soek Hui Neo, Geok Ling Lee

Objectives: The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death.

Methods: In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted.

Results: A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events, and Gaining strength and personal growth.

Significance of results: The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

目标:临终关怀象征着病人病危和死亡迫在眉睫的时刻。家属照护者在此期间的记忆可能会影响他们对病人死亡的意义建构和丧亲调整。我们旨在了解接受姑息治疗的病人临终前的家庭照护者的经历。我们还研究了照顾者在病人去世后的意义建构:在这项回顾性定性研究中,我们通过有目的的抽样调查招募了在新加坡接受姑息治疗的癌症患者的家庭照护者。研究人员与参与者进行了面对面的半结构化访谈,从照顾者的角度了解他们在患者去世前后的经历。研究采用主题内容分析法:共有 25 位丧亲家庭照顾者接受了访谈,其中配偶、成年子女和其他人各占样本的三分之一。照顾者在回忆病人临终前的经历时产生了六个主题:病人最后的形象、强烈的情感、医疗服务提供者为照顾者做好准备、告别的时刻、仪式提供安慰以及对家庭关系的影响。围绕丧亲后的意义建构,出现了四个主题:结果的意义:临终关怀是家庭照顾者为病人的死亡做准备的重要时刻。根据研究结果,有机会为家属提供支持。
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Palliative & Supportive Care
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