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Acknowledgement and use of advance care directives and goals of care by emergency department staff: a mixed method post intervention study. 急诊科工作人员对预先护理指示和护理目标的认识和使用:一项混合方法干预后研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-10-01 DOI: 10.1186/s12904-024-01566-5
Abdi D Osman, Jocelyn Howell, Michael Yeoh, Louisa Lam, Daryl Jones, George Braitberg

Introduction: Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions.

Method: We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected.

Results: In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from - 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%.

Conclusion: After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR).

导言:预先护理计划(ACP)是指包括预先护理指示(ACD)和护理目标(GOC)在内的一个过程,这种做法已被广泛应用了三十多年。根据分别于 2019 年和 2021 年进行的一项审计和一项横断面研究的结果,我们实施了多项教育和其他干预策略,旨在提高员工的意识,并强调识别和记录 ACD/GOC 的重要性。本研究旨在评估急诊科(ED)工作人员在采取这些干预措施后对 ACD 和 GOC 的认识和使用情况:我们采用了混合方法,将观察和横断面设计与反思性专题分析相结合。观察性研究的数据提取时间为 2023 年 4 月 1 日至 6 月 30 日,研究对象为随机抽样的年龄≥ 65 岁的成年人。研究人员还收集了人口统计学数据以及其他与 ACD 和 GOC 相关的患者临床数据。横断面研究的数据收集工作于 2023 年 7 月 19 日至 9 月 13 日进行,对象是急诊室的所有工作人员。收集的信息包括人口统计数据、对 ACD 和 GOC 的认识(包括存储位置和实施情况)以及对医疗决策者(MTDM)的了解,MTDM 是一个辖区术语,指的是被依法指定代表缺乏决策能力的人做出医疗决策的人,还收集了维多利亚州的其他立法要求:在观察期内,共有 22335 名患者到急诊室就诊,其中 19% 的患者(n = 6546)符合纳入条件,我们从中随机抽取了 308 名患者作为样本。我们发现,6.5% 的样本病历中记录有 ACD 文件,少于我们之前研究中发现的 8%。ACD 记录的可用性与年龄之间没有相关性(P = 0.054;CI 范围为 - 0.065 至 7.768)。横断面调查的回复率为 12%(n = 340),而之前研究的回复率为 28%(n = 476)。员工对 ACD 的了解和熟悉程度为 25%,对 GOC 的了解和熟悉程度为 45%:结论:在对员工教育和 ACP 意识进行干预后,我们发现 ACD 文件记录并没有得到改善。然而,在提高机构意识并将其纳入电子病历(EMR)的背景下,GOC 文档有所增加。
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引用次数: 0
Correction to: Readiness for advance care planning and related factors in the general population: a cross sectional study in Iran. 更正为一般人群对预先护理规划的准备程度及相关因素:在伊朗进行的一项横断面研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-30 DOI: 10.1186/s12904-024-01553-w
Ali Askari, Hosein Mohammadi Roshan, Nasim Abbaszadeh, Mahmood Salesi, Seyed Morteza Hosseini, Mobina Golmohammadi, Salman Barasteh, Omid Nademi, Razieh Mashayekh, Mohammad Hossein Sadeghi
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引用次数: 0
Caring for terminally Ill patients: the impact on oncologists. 照顾临终病人:对肿瘤学家的影响。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-28 DOI: 10.1186/s12904-024-01562-9
Nagavalli Somasundaram, Halah Ibrahim, Ranitha Govindasamy, Nur Amira Binte Abdul Hamid, Simon Yew Kuang Ong, Lalit Kumar Radha Krishna

Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF).

Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis.

Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms.

Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care - ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession.

背景:在患者的整个癌症病程中陪伴他们,并在生命的最后时刻照顾他们,会给肿瘤学家带来情感和道德上的困扰,对他们的个人和职业身份产生负面影响。更好地了解护理目标的转变对肿瘤学家的影响,可以揭示他们所面临的挑战和所需的支持。本研究探讨了护理过渡对肿瘤学家专业身份形成(PIF)的影响:从 2023 年 9 月到 12 月,我们对新加坡一家姑息关怀中心的肿瘤学家进行了半结构化访谈。以 "人格环理论"(RToP)为框架,了解患者从治疗向姑息治疗过渡的经历对肿瘤学家自我意识和身份认同的影响。研究采用归纳和演绎两种定性分析方法对数据进行分析:参与者包括六名女性和六名男性医生,年龄在 30 至 53 岁之间(平均 38 岁),平均拥有 9.75 年的肿瘤科医生经验。确定的主要领域包括:1)将病人转为姑息治疗所面临的挑战;2)处理垂死病人对肿瘤学家的影响;3)应对机制:结论:肿瘤科医生在处理护理过渡时会经历自我怀疑和道德困扰。可以通过反思和反省、同伴支持以及促进自我护理的干预措施来支持肿瘤学家的PIF,最终使他们能够从自己的经历中获得意义,重续家庭纽带,并重申他们对职业的承诺。
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引用次数: 0
Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers. 提高生活质量和支持预先护理计划的正念:针对晚期癌症患者及其家庭护理者的试点随机对照试验。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-28 DOI: 10.1186/s12904-024-01564-7
Catherine E Mosher, Kathleen A Beck-Coon, Wei Wu, Ashley B Lewson, Patrick V Stutz, Linda F Brown, Qing Tang, Paul R Helft, Kristin Levoy, Susan E Hickman, Shelley A Johns

Background: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.

Methods: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.

Results: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.

Conclusions: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.

Trial registration: ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .

背景:晚期癌症患者和家庭照顾者经常采用回避的应对策略,例如推迟预先护理计划的讨论,这导致了他们生活质量的下降。以正念为基础的干预措施在改善这类人群的生活质量方面已初见成效,但却很少应用于预先护理计划。这项试点试验考察了以小组为基础的正念提高生活质量和支持晚期护理规划(MEANING)干预对晚期癌症患者和护理者二人组的初步疗效。主要结果是患者和护理者的生活质量或幸福感,次要结果包括患者参与晚期护理规划(自我效能和准备程度)以及其他心理和症状结果:在这项试点试验中,从美国中西部地区的五家肿瘤诊所招募了晚期癌症患者,并将他们随机分配到每周六节的正念干预小组课程(33 人)或常规护理(22 人)中。结果通过基线、干预后和干预后 1 个月的调查进行评估。所有可用数据均纳入评估干预效果的多层次模型中:结果:在 "有意义 "条件下,患者的存在感和预先护理规划自我效能感在随访期间均有显著提高,而常规护理患者则没有。其他结果的组间差异无统计学意义。这些结果包括患者幸福感的其他方面、护理者的生活质量、患者对预先护理计划的准备程度、护理者的负担、患者和护理者的抑郁症状、焦虑、睡眠障碍、认知回避以及对癌症的平静接受。然而,只有 MEANING 患者的心理健康水平在各次随访中均有适度提高,而 MEANING 护理人员的生活质量在 1 个月的随访中也有适度提高。某些心理结果,如随访 1 个月时护理人员的负担,在 "有意义 "条件下也有适度改善。两种情况下的患者都报告说,他们参与预先护理计划的准备程度都有小到中等程度的提高:基于正念的干预有望改善晚期癌症患者和照护者的生活质量和预先护理规划结果,值得进一步试验:试验注册:ClinicalTrials.gov NCT03257007。注册时间:2017 年 8 月 22 日,https://clinicaltrials.gov/ct2/show/NCT03257007 。
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引用次数: 0
Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study. 癌症临终患者的家庭照护者在从医院向居家姑息关怀过渡期间的经历:一项定性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-27 DOI: 10.1186/s12904-024-01559-4
Yanan Xu, Yahui Liu, Yubiao Kang, Danruo Wang, Yujie Zhou, Ligui Wu, Ling Yuan

Background: The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.

Methods: This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent.

Results: A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).

Conclusion: Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.

背景:接受姑息治疗的临终癌症患者的家庭照护者从医院到家庭的过渡是一个复杂而具有挑战性的过程。这一护理阶段不仅涉及病人的生理和心理健康,还涉及家庭照护者的角色适应和情感支持。为了深入了解这一过程中的各种体验和感受,我们开展了一项定性研究:本研究采用了描述性现象学研究方法。访谈的重点是癌症临终患者的家庭照护者在从医院向家庭姑息关怀过渡的过程中的具体经历、面临的挑战、获得的支持以及应对策略。所有数据均严格保密,并在征得参与者同意后进行录音和转录:共有 15 名家属照护者参与。结果:共有 15 名家属照护者参与了研究,研究确定了四个主要主题和九个次主题:复杂的过渡过程(对不确定性的焦虑、对过渡的抵触)、照护的不连续性(出院指导不足、缺乏持续的沟通机制)、出院后的持续照护需求(需要家庭照护知识和技能、社会和情感支持、悲伤辅导和死亡教育)以及个人成长和收获(应对能力增强、心理复原力提高):在从医院到家庭护理的过渡期间,家庭护理者面临着情感、认知、实践和社会支持方面的诸多挑战。为改善护理体验和生活质量,应提供适当的培训和支持,以更好地满足护理人员的需求。
{"title":"Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study.","authors":"Yanan Xu, Yahui Liu, Yubiao Kang, Danruo Wang, Yujie Zhou, Ligui Wu, Ling Yuan","doi":"10.1186/s12904-024-01559-4","DOIUrl":"https://doi.org/10.1186/s12904-024-01559-4","url":null,"abstract":"<p><strong>Background: </strong>The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.</p><p><strong>Methods: </strong>This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent.</p><p><strong>Results: </strong>A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).</p><p><strong>Conclusion: </strong>Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"230"},"PeriodicalIF":2.5,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11438011/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142330575","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
Multicenter exploration of specialist palliative care in patients with left ventricular assist devices - a retrospective study. 左心室辅助装置患者专科姑息治疗的多中心探索--一项回顾性研究。
IF 2.5 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-23 DOI: 10.1186/s12904-024-01563-8
Theresa Tenge, Shaylin Shahinzad, Stefan Meier, Manuela Schallenburger, Yann-Nicolas Batzler, Jacqueline Schwartz, Anja Coym, Johannes Rosenbruch, Mitra Tewes, Steffen T Simon, Carmen Roch, Ute Hiby, Christian Jung, Udo Boeken, Jan Gaertner, Martin Neukirchen

Background: The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients.

Methods: We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included.

Results: In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit.

Conclusions: This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.

背景:使用左心室辅助装置(LVAD)的晚期心力衰竭患者越来越多。尽管有指南建议,但人们对专科姑息治疗在 LVAD 患者中的应用知之甚少,尤其是在欧洲。本研究旨在调查 LVAD 患者接受专科姑息治疗的时机和环境:我们在 2022 年进行了一项回顾性多中心研究。我们确定了德国 LVAD 中心的专科姑息治疗服务,并邀请他们参与研究。研究纳入了来自七个中心的 40 名成年 LVAD 患者(平均年龄 65 岁(SD 7.9),90% 为男性),这些患者在住院期间接受了姑息治疗专家会诊:结果:55 个 LVAD 中心中有 37 个(67.3%)提供了专科姑息治疗。从植入 LVAD 到首次接触姑息治疗专家的中位时间为 17 个月(IQR 6.3-50.3 个月)。从就诊到死亡的中位时间为 7 天(IQR 3-28 天)。65%的会诊是在重症监护室/中级监护室进行的,其中半数患者有 "禁止复苏 "指令。在参与过程中,护理规划明显增加(预嘱前:n = 15,预嘱后:n = 19,p 结论:在参与过程中,护理规划明显增加(预嘱前:n = 15,预嘱后:n = 19,p 结论):这项欧洲最大规模的多中心调查显示,接受专科姑息治疗的 LVAD 患者融合较晚,且身体和心理症状负担较重。这项研究强调,迫切需要更早地纳入姑息治疗,以识别和解决控制不佳的症状。需要进一步开展研究和教育工作,以缩小指南建议与现状之间的差距。
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引用次数: 0
Knowledge, attitudes, and barriers: Palliative Care services for women with HIV in resource-limited settings 知识、态度和障碍:在资源有限的环境中为感染艾滋病毒的妇女提供姑息关怀服务
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-17 DOI: 10.1186/s12904-024-01558-5
Ngozi Idemili-Aronu, Tonia Chinyelu Onyeka, Uchechukwu Joel Okenwa, John Oluwaseyi Jemisenia, Ikechukwu Alex Okoli, John Olajide Olawepo, Echezona Edozie Ezeanolue
Women living with HIV (WLWH) in low- middle-income countries (LMICs) face increased mortality risks from comorbidities despite progress in antiretroviral therapy. Palliative care (PC) is vital for these patients, yet its integration in LMICs, such as Nigeria, is suboptimal due to unique challenges. This study investigated the knowledge, perceived barriers, and facilitators influencing PC integration into routine HIV care within healthcare (HC) settings. A cross-sectional survey was conducted among WLWH in twelve HC facilities throughout Nigeria. Data collection involved surveys focused on PC knowledge, attitudes, facilitators, and barriers. Logistic regression analyses were employed to examine the data. This study revealed significant gaps in knowledge and attitudes towards PC among HIV + women at NISA-MIRCs. Over 90% were unaware of PC services, but many saw its potential to offer hope (55%) and improve quality of life (56.5%). The key predictors of PC knowledge included education, occupation, religion, having fewer children, urban residence, type of residence, and having a high income (p < .05). Despite the willingness to access PC, barriers such as negative HC worker attitudes, perceived high cost, and limited decision autonomy could hinder integration. Facilitators included low-cost services, positive HCW attitudes, physician recommendations, and perceived necessity for personal well-being. Knowledge gaps, diverse attitudes, and significant barriers highlight the need for targeted PC interventions for WLWH. Tailoring educational programs, addressing cost barriers, and improving healthcare infrastructure are crucial to enhancing PC accessibility and quality. These findings can guide policymakers and HC practitioners toward more effective and inclusive care strategies.
尽管抗逆转录病毒疗法取得了进展,但中低收入国家(LMICs)的女性艾滋病病毒感染者(WLWH)因合并症而面临更高的死亡风险。姑息关怀(PC)对这些患者至关重要,但由于存在独特的挑战,在尼日利亚等低收入、中等收入国家,姑息关怀的整合效果并不理想。本研究调查了在医疗保健(HC)环境中将姑息治疗纳入常规 HIV 护理的相关知识、感知障碍和促进因素。研究人员对尼日利亚全国 12 家医疗机构中的 WLWH 进行了横断面调查。数据收集包括对 PC 知识、态度、促进因素和障碍的调查。采用逻辑回归分析法对数据进行了检验。这项研究揭示了尼日利亚艾滋病监测中心(NISA-MIRC)中感染艾滋病毒的妇女在个人护理知识和态度方面存在的巨大差距。超过 90% 的人不了解 PC 服务,但许多人认为 PC 有可能带来希望(55%)和改善生活质量(56.5%)。对 PC 知识的主要预测因素包括教育程度、职业、宗教信仰、子女较少、城市居民、居住地类型和高收入(p < .05)。尽管人们愿意使用个人护理服务,但人道协调员的消极态度、认为高昂的费用和有限的决策自主权等障碍可能会阻碍人们融入个人护理服务。促进因素包括低成本服务、医护人员的积极态度、医生的建议以及个人健康的必要性。知识差距、不同的态度和重大障碍凸显了对 WLWH 进行有针对性的 PC 干预的必要性。量身定制教育计划、解决成本障碍和改善医疗基础设施对于提高个人护理的可及性和质量至关重要。这些发现可以指导政策制定者和医疗保健从业人员制定更有效、更具包容性的护理策略。
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引用次数: 0
Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review 少数民族老年人获得姑息关怀和生命终结关怀的经历和机会:范围界定审查
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-17 DOI: 10.1186/s12904-024-01555-8
Narin Aker, Sarah Griffiths, Nuriye Kupeli, Rachael Frost, Pushpa Nair, Kate Walters, Lee Joshua Melo, Nathan Davies
Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups’ and carers’ access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals’ experiences. Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions.
许多少数族裔群体的老年人在临终前遭遇不平等待遇,包括在获得姑息关怀方面的障碍。随着国际移民人数的增加,有必要了解这些差异,并在医疗保健政策中考虑少数民族群体的需求。本综述旨在搜集证据,说明少数民族老年人如何获得和利用姑息关怀和临终关怀服务、对姑息关怀和临终关怀服务的偏好、姑息关怀和临终关怀服务的体验,以及不同国家和不同健康状况的少数民族群体在这方面的差异。按照乔安娜-布里格斯研究所(JBI)的指导进行范围界定审查。2024 年对八个在线数据库(MEDLINE、Embase、Web of Science、CINAHL、PsycInfo、Assia、Scopus 和 Cochrane 图书馆)和灰色文献进行了检索。其中包括关注少数民族老年人和照护者获得和使用姑息关怀和生命末期关怀的定性资料,以及关注医护人员经验的资料。23 篇资料被纳入综述,其中大部分是来自美国的访谈研究。研究结果反映了获得姑息关怀和生命末期关怀的一系列偏好、不平等、促进因素和障碍,主题涉及(1) 对临终关怀和姑息关怀的了解,(2) 社会和结构问题,(3) 语言和健康知识,(4) 迁徙经历,(5) 对医疗服务和专业人员的信任,(6) 宗教和希望,以及 (7) 文化价值观。本综述确定了医疗服务提供者应考虑的领域,以制定更适合文化背景的姑息关怀和生命末期关怀实践,包括建立信任和改善沟通、共享信息、减少语言障碍、解决污名化问题,以及在相关情况下承认文化和宗教的重要性。还需要在更多样化的地理环境中,针对特定的健康状况,从交叉角度(如地理位置或社会经济地位,而不仅仅是种族、民族和文化)开展进一步的定性研究。
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引用次数: 0
“I couldn’t say goodbye”: Thematic analysis of interviews with bereaved relatives who lost their loved ones during the COVID-19 pandemic "我无法说再见":对在 COVID-19 大流行期间失去亲人的遗属的访谈进行专题分析
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-12 DOI: 10.1186/s12904-024-01551-y
Karolina Vlckova, Kristyna Polakova, Adam Houska, Marketa Zindulkova, Martin Loucka
Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process. This article describes results from a qualitative study with bereaved relatives focused on their experience with communication with physicians during the COVID-19 pandemic. Relatives lacked empathetic communication, they also experienced fear of getting infected and they tended to express understanding for the challenging circumstances faced by the healthcare staff.
对于医疗保健专业人员来说,传递重大消息通常具有挑战性,而 COVID-19 大流行和相关限制给这一过程带来了更多挑战。探讨在 COVID-19 大流行期间,丧亲亲属从医护人员那里获得重大消息的经历。这是一项定性研究,采用主题分析和编码手册的方法,对通过半结构式访谈收集到的数据进行分析。数据收集时间为 2022 年 7 月至 8 月,采访对象为在大流行期间(2020 年 3 月至 2022 年 3 月)失去亲人的遗属。研究人员通过社交媒体和一家大学医院姑息治疗病房邀请在该病房接受治疗的死亡患者的遗属参与本研究,采用方便抽样和滚雪球的方法招募参与者。本研究共访问了 22 名参与者,其中包括 4 名男性和 18 名女性。大部分参与者都是逝者的儿子或女儿(5 个孙辈、14 个儿子/女儿、2 个配偶、1 个曾侄女)。研究确定了六个主题:禁止探视造成的负担、对 COVID-19 的恐惧、医护人员不恰当的行为和沟通、高度需要情感支持、需要详细和诚实的沟通、倾向于为医护人员的错误和失误找借口。在大流行病期间,由于缺乏与患者的接触,以及缺乏与员工的支持和感同身受的沟通,传递严重消息的工作受到了负面影响。要克服这些情况,可以利用各种交流工具(如视频会议或电话)进行频繁交流,并在交流过程中保持同理心和诚实。本文介绍了一项针对丧亲者进行的定性研究的结果,研究重点是他们在 COVID-19 大流行期间与医生沟通的经历。亲属们缺乏感同身受的沟通,他们也经历过害怕被感染的恐惧,他们倾向于对医护人员所面临的挑战性环境表示理解。
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引用次数: 0
Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study 分析葡萄牙姑息关怀的创新政策和实践:一项定性研究
IF 3.1 2区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Pub Date : 2024-09-11 DOI: 10.1186/s12904-024-01556-7
Marcelle Miranda da Silva, Audrei Castro Telles, Cristina Lavareda Baixinho, Eunice Sá, Andreia Costa, Maria Adriana Pereira Henriques
Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals’ lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks’ response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Health care professionals aim to increase patients’ time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.
葡萄牙等拥有正式的姑息关怀政策以及该领域先进的综合实践的国家,在实现卓越关怀方面面临着挑战,尤其是在以家庭为基础的援助方面。问题包括医疗服务提供者之间的关怀协调、网络中各医疗专业人员角色的混淆,以及缺乏对行动的监督和评估。我们的目标是分析葡萄牙在初级医疗保健中实施姑息关怀的情况。我们在葡萄牙开展了一项定性、描述性和探索性研究,参与人员包括具有姑息关怀经验的医护专业人员。我们在 2023 年 3 月至 10 月期间通过半结构式访谈和焦点小组收集了数据。共有 18 名专业医护人员参与。我们使用 Alceste 软件进行词法分析。研究获得了伦理委员会的授权。我们确定了四个类别;第 1 类和第 2 类涉及研究目标,占语料的 77%。参与者强调了获取机会不公平、战略发展计划短期目标无法实现以及识字率低等问题。他们强调了立法、居家姑息关怀全科专业培训计划和早期转诊的重要性。居家姑息关怀面临的挑战包括专业人员缺乏奉献精神、缺乏全天候服务以及缺乏有能力的家庭照护者。网络对入院治疗和病人从医院到家庭的转变的响应也不够充分,无法获得专业团队的帮助。医护人员的目标是通过充分利用国家姑息关怀网络的资源,增加病人在家的时间,减少急诊就诊,并最大限度地减少住院治疗。除了投资以维持网络的实施和法律保障的姑息关怀权利外,该国还必须关注用于评估和监测行动的可衡量指标,为短期、中期和长期提供更好的指导。
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引用次数: 0
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BMC Palliative Care
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