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A Prospective Study with Patients and Families on the Usefulness of Accurate Prognosis for Palliative Care Patients. 与患者和家属共同开展的一项前瞻性研究:准确预后对姑息治疗患者的用处。
IF 1.6 Q3 Social Sciences Pub Date : 2024-04-01 Epub Date: 2024-03-06 DOI: 10.1080/15524256.2024.2321330
Manuela Piovesan, Pauline Orr, Sarah Tevyaw, Emily Roussos, Chams Cherid, Sylvie Bouchard

Prediction of life expectancy in terminally ill patients is an important end-of-life care issue for patients, families and mental health workers during the last days of life. This study was conducted to examine the importance/usefulness for patients/families to have an accurate prognosis and its impact on planning their activities prior to death. All patients admitted during a period of one year were included. Patients' and families' viewpoints on the usefulness of an accurate prognosis was documented at admission. There were 285 patients in the cohort. The median time to death was 8 days. Most families (83%) rated the importance of an accurate prognosis as moderately (13%) to very much useful (70%). A total of 42% of patients were able to complete e the questionnaire. Among these, 58% found it moderately to very much useful. For families, having an accurate prognosis influenced the planning of visits (69%), communication/closure (42%) and spiritual needs/funeral arrangements (31%). Patients identified planning of visits (10%), communication/closure (12%), and goals/accomplishments (9%) as very important. Discussing the prognosis and its impact is very helpful for the mental health professionals to have open and honest conversations with patients/families to identify, prioritize and adapt treatment to achieve goals prior to death.

预测临终病人的预期寿命是病人、家属和心理健康工作者在生命最后几天所面临的一个重要的临终关怀问题。本研究旨在探讨准确的预后对患者/家属的重要性/实用性,以及预后对规划患者生前活动的影响。研究对象包括一年内入院的所有患者。入院时记录了患者和家属对准确预后有用性的看法。该组共有 285 名患者。中位死亡时间为 8 天。大多数家属(83%)将准确预后的重要性评为中等(13%)到非常有用(70%)。共有 42% 的患者能够完成问卷调查。其中,58% 的患者认为问卷的作用从一般到非常大不等。对家属而言,准确的预后影响了探视计划(69%)、沟通/关闭(42%)和精神需求/葬礼安排(31%)。患者认为探视计划(10%)、沟通/封闭(12%)和目标/成就(9%)非常重要。讨论预后及其影响非常有助于精神卫生专业人员与患者/家属进行开诚布公的对话,以确定、优先考虑和调整治疗方法,从而在死亡前实现目标。
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引用次数: 0
Hospice Knowledge, Attitudes, and Preference among Older Chinese Immigrants in the United States. 美国老年华裔移民的临终关怀知识、态度和偏好。
IF 1.6 Q2 SOCIAL WORK Pub Date : 2024-04-01 DOI: 10.1080/15524256.2024.2330920
Xiaofang Liu, Cathy Berkman

Racial disparities in hospice use are a longstanding concern in the U.S. Asian Americans are among the least likely to receive hospice care and to be included in studies on this topic. This study examined the knowledge, attitudes, and preferences related to hospice care among older Chinese immigrants and associated factors. A sample of 262 Chinese immigrants age 60+ was recruited from six older adult centers in NYC. In-person interviews were conducted in Mandarin and Cantonese. Non-English-speaking older Chinese immigrants had very limited knowledge about hospice care. Only 26% of respondents had heard of hospice, and a few could correctly define any components. After receiving a comprehensive definition of hospice care, study participants expressed a positive attitude and a strong willingness to use hospice if near the end of life. Notably, some respondents still held misconceptions about hospice and were less positive in their attitude and preference for hospice care. These findings underscore the necessity for clear and accessible information about hospice among this population throughout the trajectory from good health to end of life. Further research is needed to identify the range of factors that influence the attitudes and preferences of older Chinese immigrants toward hospice care.

在美国,安宁疗护使用中的种族差异是一个长期关注的问题。亚裔美国人是最不可能接受安宁疗护的人群之一,也是最不可能被纳入该主题研究的人群之一。本研究调查了华裔老年移民对临终关怀的认识、态度和偏好以及相关因素。我们从纽约市的六个老年人中心招募了 262 名 60 岁以上的中国移民。访谈以普通话和广东话进行。不讲英语的中国老年移民对安宁疗护的了解非常有限。只有 26% 的受访者听说过安宁疗护,只有少数受访者能正确定义安宁疗护的任何组成部分。在了解了安宁疗护的全面定义后,研究参与者表达了积极的态度,并表示如果生命即将结束,他们非常愿意使用安宁疗护。值得注意的是,一些受访者仍然对安宁疗护存在误解,对安宁疗护的态度和偏好也不那么积极。这些发现突出表明,在这一人群从身体健康到生命终结的整个过程中,有必要向他们提供清晰易懂的安宁疗护信息。还需要进一步研究,以确定影响中国老年移民对临终关怀的态度和偏好的一系列因素。
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引用次数: 0
Editor Introduction. 编辑介绍。
IF 1.6 Q3 Social Sciences Pub Date : 2024-04-01 Epub Date: 2024-06-05 DOI: 10.1080/15524256.2024.2362049
Ellen L Csikai
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引用次数: 0
Inclusion of Social Work in Comprehensive Palliative Care to Address Psychosocial Needs of Advanced Cancer Patients in Vietnam. 将社会工作纳入综合姑息治疗,以满足越南晚期癌症患者的社会心理需求。
IF 1.6 Q3 Social Sciences Pub Date : 2024-04-01 Epub Date: 2024-02-12 DOI: 10.1080/15524256.2024.2310863
Quynh Xuan Nguyen Truong, The Ngoc Ha Than, Duong Le Dai, Khoa Duy Duong, Eric L Krakauer, Bumi Herman, Surasak Taneepanichskul

The need for psychosocial care among patients with serious illnesses and available social work services continues to be great, especially in low- and middle-income countries. To evaluate the specific needs of Vietnamese cancer patients' quality of life (QOL), prevalence and severity of symptoms including depression and anxiety, and caregiver burden were assessed. Data on QOL, mood, caregiver burden, and other parameters were collected through face-to-face and phone- interviews. The QOL assessed by European Quality of Life scale version 5D (EQ5D) was poor but consistent with other studies of cancer patients. Assessed by the Hospital Anxiety and depression Scale (HADS), borderline or severe anxiety and depression were prevalent. Caregiver burden was high for one third of study participants. These results confirm the need among cancer patients for psycho-social support services that currently are rarely available in Vietnam. In light of this need, a comprehensive palliative care (CPC) service, including social work, was created to improve the quality of life (QOL) of Vietnamese cancer patients.

重病患者对社会心理护理和现有社会工作服务的需求仍然很大,尤其是在中低收入国家。为了评估越南癌症患者对生活质量(QOL)、抑郁和焦虑等症状的发生率和严重程度以及照顾者的负担等方面的特殊需求,我们对越南癌症患者的生活质量进行了评估。通过面对面访谈和电话访谈收集了有关 QOL、情绪、照顾者负担和其他参数的数据。根据欧洲生活质量量表 5D 版(EQ5D)评估,患者的生活质量较差,但与其他癌症患者研究结果一致。根据医院焦虑和抑郁量表(HADS)评估,患者普遍存在边缘或严重焦虑和抑郁。三分之一的研究参与者的护理负担很重。这些结果证实了癌症患者对社会心理支持服务的需求,而目前越南很少提供这种服务。有鉴于此,越南设立了包括社会工作在内的综合姑息治疗(CPC)服务,以改善越南癌症患者的生活质量(QOL)。
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引用次数: 0
"Stop Imposing on Us": A Critical Examination of Ethnocultural Considerations in the Canadian Volunteer Hospice Palliative Care Landscape. "停止强加给我们":对加拿大安宁疗护缓和医疗志愿服务中的民族文化因素进行批判性审视。
IF 1.6 Q3 Social Sciences Pub Date : 2024-04-01 Epub Date: 2024-02-28 DOI: 10.1080/15524256.2024.2321522
Cheryl-Anne Cait, Ginette Lafreniere

Volunteers are foundational in hospice programs. The purpose of this research was to address social, ethnic and demographic changes in Southwestern Ontario and understand how this may affect volunteer recruitment, and representation. Interviews and focus groups were conducted with hospice volunteers, key informants from leaders in ethnocultural communities, and hospice staff. Qualitative data from the interviews was analyzed using thematic analysis in five phases. Findings suggest ethnocultural interpretations of hospice can be very different than Westernized, Eurocentric ideas around end-of-life care. Systemic and structural barriers, information sharing, volunteer motivation and representation were found to influence and impact ethnocultural volunteer recruitment in hospice palliative care. Using a critical analysis allows us to identify the "imposition" of a Euro-ethnocentric hospice palliative care model that prevents recruitment of and impedes access of ethnocultural groups to hospice palliative care. To build bridges across predominantly White/Western models of care to ethnocultural racialized communities requires constant communication, relationship building, and determination in mutuality of learning on behalf of the dominant model. This research has implications for different regions of Canada providing hospice palliative care and hoping to increase ethnocultural accessibility and volunteer recruitment for hospice palliative care.

志愿者是安宁疗护项目的基础。本研究的目的是探讨安大略省西南部的社会、种族和人口变化,并了解这可能会如何影响志愿者的招募和代表性。研究人员与安宁疗护志愿者、来自民族文化社区领袖的关键信息提供者以及安宁疗护工作人员进行了访谈和焦点小组讨论。访谈中的定性数据分五个阶段进行了主题分析。研究结果表明,民族文化对临终关怀的理解可能与西方化的、以欧洲为中心的临终关怀理念大相径庭。研究发现,系统性和结构性障碍、信息共享、志愿者动机和代表性会影响安宁疗护姑息关怀中的民族文化志愿者招募。通过批判性分析,我们发现了以欧洲民族为中心的安宁疗护姑息关怀模式的 "强加",这种模式阻碍了安宁疗护姑息关怀对民族文化群体的招募,也阻碍了他们参与安宁疗护姑息关怀。要在以白人/西方人为主的关怀模式与民族文化种族化社区之间架起桥梁,需要不断沟通、建立关系,以及代表主流模式相互学习的决心。这项研究对加拿大不同地区提供安宁疗护姑息关怀以及希望提高民族文化可及性和招募安宁疗护姑息关怀志愿者具有重要意义。
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引用次数: 0
Family History. 家族历史
IF 1.6 Q3 Social Sciences Pub Date : 2024-04-01 Epub Date: 2024-02-12 DOI: 10.1080/15524256.2024.2315430
Tarek Zieneldien
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引用次数: 0
Situational Analysis of Barriers to Continuity of End-of-Life Care in Urban Areas, Bangkok. 曼谷市区临终关怀持续障碍的情境分析。
IF 1.6 Q3 Social Sciences Pub Date : 2024-01-01 Epub Date: 2023-11-17 DOI: 10.1080/15524256.2023.2282354
Nisa Wongchan, Kittikorn Nilmanat, Tippamas Chinnawong

This qualitative study was designed to describe the continuity of end-of-life care and identify barriers to continuity in urban Bangkok. Continuity of care is considered an essential part of palliative care to promote the quality of life of patients at the end of life. The majority of studies have been conducted exploring continuity of care in rural communities. However, few studies have focused on urban areas, particularly in big cities. Twelve healthcare providers were the participants, including nurses in inpatient units, and in the Health Community and Continuity of Care Unit, a palliative care physician, and social workers. The data collection consisted of individual interviews, field notes, and observations. Content analysis was used to analyze data and identify barriers. The continuity of end-of-life care in a selected setting was fragmented. Three main barriers to the continuity of end-of-life care consisted of misunderstandings about patients who required palliative care, staff workloads, and incomplete patient information. The development of a comprehensive patient information sheet for communication among a multidisciplinary team could promote continuity of end-of-life care from hospital to home. An interprofessional training course on continuity of end-of-life care is also recommended. Finally, the staff workload should be monitored and managed.

本定性研究旨在描述曼谷城市临终关怀的连续性,并确定连续性的障碍。护理的连续性被认为是姑息治疗的重要组成部分,以促进患者在生命结束时的生活质量。大多数研究都是探讨农村社区护理的连续性。然而,很少有研究集中在城市地区,特别是大城市。12名医疗服务提供者是参与者,包括住院病房、卫生社区和连续性护理病房的护士、一名姑息治疗医生和社会工作者。数据收集包括个人访谈、实地记录和观察。内容分析用于分析数据并识别障碍。在选定的环境中,临终关怀的连续性是支离破碎的。临终关怀的连续性的三个主要障碍包括对需要姑息治疗的患者的误解,工作人员的工作量和不完整的患者信息。为多学科团队之间的沟通制定一份全面的病人信息表,可以促进从医院到家庭的临终关怀的连续性。还建议举办关于临终关怀连续性的跨专业培训课程。最后,应监测和管理工作人员的工作量。
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引用次数: 0
Exploring the Lived Experiences of Rural Hospice Social Workers in Navigating "Cracked" Systems. 探索农村临终关怀社会工作者在“破解”系统中的生存经验。
IF 1.6 Q3 Social Sciences Pub Date : 2024-01-01 Epub Date: 2023-09-26 DOI: 10.1080/15524256.2023.2262154
Jessica Curd, Michin Hong

Social workers often encounter health and resource disparities and caregiver challenges in support of hospice patients and families. Social workers also play a critical role in navigating systems and confronting systemic barriers. Their input regarding macro practice is invaluable, though there is not much literature pertaining to end-of-life disparities as experienced from the social worker point of view. There is also limited research from the hospice social worker perspective, with little pertaining to those providing care in rural areas. To address these gaps, this phenomenological study explored the lived experiences of rural hospice social workers to better understand their role in these matters. Data collection occurred through in-depth unstructured qualitative interviews. A total of 19 rural hospice workers participated in the study. There were four main themes identified: systemic issues in hospice settings, resource and geographic barriers, tensions and benefits of interprofessional collaboration, and hospice work environment. Based on these findings, recommendations for hospice social work practice, research, and policy include support of and elevation of the voice of hospice social workers on the interprofessional team, assessment of resource barriers to improve hospice social work interventions and improve quality of life for dying persons, education of hospice administrators to understand best ways to support hospice social, and implementation of policy change to expedite access to caregiver resources at end of life.

社会工作者在支持临终关怀患者和家庭方面经常遇到健康和资源差异以及护理人员的挑战。社会工作者在驾驭系统和应对系统性障碍方面也发挥着关键作用。他们在宏观实践方面的投入是宝贵的,尽管从社会工作者的角度来看,没有太多关于临终差异的文献。从临终关怀社会工作者的角度来看,研究也很有限,很少涉及农村地区的护理人员。为了解决这些差距,这项现象学研究探索了农村临终关怀社会工作者的生活经历,以更好地理解他们在这些问题中的作用。数据收集是通过深入的非结构化定性访谈进行的。共有19名农村临终关怀工作者参与了这项研究。确定了四个主要主题:临终关怀环境中的系统性问题、资源和地理障碍、跨专业合作的紧张关系和好处以及临终关怀工作环境。基于这些发现,对临终关怀社会工作实践、研究和政策的建议包括支持和提高临终关怀社会工作者在跨专业团队中的发言权,评估改善临终关怀社会服务干预和提高临终人员生活质量的资源障碍,对临终关怀管理人员进行教育,了解支持临终关怀社会的最佳方式,并实施政策变化,以加快临终关怀人员资源的获取。
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引用次数: 0
Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review. 老年人高级护理指导原则对患有严重神经认知障碍(痴呆症)的居民的护理:范围界定综述。
IF 1.6 Q2 SOCIAL WORK Pub Date : 2024-01-01 Epub Date: 2023-06-29 DOI: 10.1080/15524256.2023.2229041
Raúl Hormazábal-Salgado, Abdi D Osman, Margarita Poblete-Troncoso, Dean Whitehead, Danny Hills

The aim of this review was to identify, assess, collate, and analyze existing research that has made a direct contribution to aiding understanding of the ethical and decision-making issues related to the use of advance care directives for people with dementia and/or other major neurocognitive disorders and/or their surrogate decision-makers on treatment. The Web of Science, Scopus, PubMed, CINAHL, Academic Search Ultimate, and MEDLINE databases were searched between August and September 2021 and July to November 2022 limited to primary studies written in English, Spanish, or Portuguese. Twenty-eight studies of varying quality that addressed related thematic areas were identified. These themes being support for autonomy in basic needs (16%), making decisions ahead/planning ahead and upholding these decisions (52%), and support in decision-making for carers (32%). Advance care directives are an important mechanism for documenting treatment preferences in patient care planning. However, the available literature on the topic is limited in both quantity and quality. Recommendations for practice include involving decision makers, promoting educational interventions, exploring how they are used and implemented, and promoting the active involvement of social workers within the healthcare team.

本综述的目的是识别、评估、整理和分析现有研究,这些研究对帮助理解与痴呆症和/或其他主要神经认知障碍患者和/或其治疗替代决策者使用预先护理指令有关的伦理和决策问题做出了直接贡献。在2021年8月至9月以及2022年7月至11月期间,对Web of Science、Scopus、PubMed、CINAHL、Academic Search Ultimate和MEDLINE数据库进行了搜索,仅限于用英语、西班牙语或葡萄牙语撰写的初级研究。确定了涉及相关主题领域的28项不同质量的研究。这些主题是支持基本需求的自主权(16%),提前做出决定/提前规划并坚持这些决定(52%),以及支持护理人员的决策(32%)。预先护理指令是记录患者护理计划中治疗偏好的重要机制。然而,关于这一主题的现有文献在数量和质量上都是有限的。实践建议包括让决策者参与进来,促进教育干预,探索如何使用和实施这些干预,以及促进社会工作者在医疗团队中的积极参与。
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引用次数: 0
I Am a Hospice Social Worker. 我是一名安宁疗护社工。
IF 1.6 Q3 Social Sciences Pub Date : 2024-01-01 Epub Date: 2023-07-09 DOI: 10.1080/15524256.2023.2232120
Reid M Jacobs
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引用次数: 0
期刊
Journal of Social Work in End-of-Life & Palliative Care
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