Terminally Ill

身患绝症
  • 文章类型: Editorial
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  • 文章类型: Journal Article
    背景:随着人们寿命的增加以及全球范围内从传染病向非传染病的过渡,在低收入和中等收入国家(LMICs),越来越多的绝症患者需要家庭护理。
    目的:本系统综述评估了LMIC中晚期疾病患者的家庭护理模式。测量的主要结果是生活质量(QoL),坚持治疗,疲劳,双习惯和相关活动。
    方法:本综述是根据系统综述和荟萃分析(PRISMA)建议的首选报告项目进行的。四个数据库;护理和相关健康文献累积指数(CINAHL),MEDLINE(Ovid),Cochrane图书馆和Scopus,系统地搜索了潜在的相关研究。进行记录筛选(标题/摘要和全文),共7项研究(4项随机对照试验[RCT]和3项准实验研究)纳入本综述。
    结果:尽管纳入的研究报告患者的QoL显著增加,这些研究有质量问题。
    结论:注意到现有研究的普遍匮乏,以及LMIC跨地域的质量问题。需要对绝症患者进行更多的家庭护理研究,以提高其质量并在这些地区传播。
    BACKGROUND: With the increasing lifespan of people and the transition from communicable to non-communicable diseases across the globe, there is an increasing number of people with terminal illnesses requiring home-based care in Low- and Middle-Income Countries (LMICs).
    OBJECTIVE: This systematic review evaluated home-based care models for patients with terminal illnesses in LMICs. The primary outcomes measured are quality of life (QoL), adherence to treatment, fatigue, bimanual and related activities.
    METHODS: This review was conducted in accordance with the preferred reporting items for systematic reviews and meta-analyses (PRISMA) recommendations. Four databases; Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE (Ovid), Cochrane Library and Scopus, were systematically searched for potentially relevant studies. Screening of records (titles/abstracts from and full-texts) was done and a total of seven studies (four Randomized Control Trials [RCTs] and three quasi-experimental studies) were included in this review.
    RESULTS: Even though the included studies reported significant increase in the QoL of the studied patients, the studies have quality concerns.
    CONCLUSIONS: Noting the general paucity of existing studies coupled with quality concerns across geographies in LMICs. More studies on home-based care for patients with terminal illness are needed with improved qualities and spread in these regions.
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  • 文章类型: Journal Article
    为了帮助医疗保健专业人员(HCP)在传达有关死亡的信息时更加自信,我们寻求为HCP开发一种沟通模型,以促进非紧急情况下与垂死患者和家庭护理人员(FC)的对话.
    我们使用了四阶段综合方法:(1)基于系统的文献综述和专家知识创建初步模型,(2)国际姑息治疗专家对示范草案的审查,(3)关键利益相关者的审查,(4)沟通专家的最终评估。
    在临床识别死亡后,沟通模型为基于三个阶段的对话导航提供了结构和实用的沟通辅助工具。它将内容和关系水平描述为关于接近死亡的有效对话的核心维度,并强调了HCP自我意识和自我护理在照顾死者时的重要性。
    基于关键利益相关者的系统参与,该模型支持临床医生成功且更自信地浏览有关濒临死亡的患者及其FC的挑战性对话.
    这项研究扩展了有关接近死亡的交流的理论基础,并为教育干预和临床使用提供了实用的模型。
    UNASSIGNED: To help healthcare professionals (HCP) act with more confidence when communicating about approaching death, we sought to develop a communication model for HCP to facilitate conversations with dying patients and family caregivers (FC) in nonemergency situations.
    UNASSIGNED: We used a four-phase integrative approach: (1) creation of a preliminary model based on a systematic literature review and expert knowledge, (2) review of the model draft by international palliative care experts, (3) review by key stakeholders, and (4) final appraisal by communication experts.
    UNASSIGNED: After the clinical recognition of dying, the communication model provides a structure and practical communication aids for navigating the conversation based on three phases. It describes the content and relational level as core dimensions of effective conversations about approaching death and highlights the importance of HCP self-awareness and self-care when caring for the dying.
    UNASSIGNED: Based on systematic involvement of key stakeholders, the model supports clinicians navigating challenging conversations about approaching death with dying patients and their FC successfully and with more confidence.
    UNASSIGNED: This study expands the theoretical basis for communication about approaching death and offers a pragmatic model for educational interventions and clinical use.
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  • 文章类型: Journal Article
    背景:晚期疾病是一种不可逆转的疾病,没有维持生命的程序,通常导致死亡或永久性残疾,从中恢复是不可能的。当涉及时,家庭护理人员被认为可以改善健康状况,比如减少住院,并建立患者最初获得专业治疗服务的机会。然而,照顾患有绝症的患者被视为提供护理最困难的方面之一。这项研究旨在找出挑战,以及家庭照顾者制定的应对策略,以应对绝症患者的护理。
    方法:采用探索性描述性定性方法。来自Korle-Bu教学医院的二十(20)家庭护理人员自愿参加了该研究。对参与者进行了半结构化访谈。然后使用主题分析对转录的访谈进行分析。
    结果:从分析来看,出现了三个主要主题:挑战,应对策略,和社会支持。这些主题包括十六个次主题,包括财政负担,健康状况不佳,信仰和祈祷,以及卫生专业人员的支持。从研究中,男性和女性家庭照顾者都说,为患有绝症的患病亲属提供护理的特点是日常工作需要时间,而且情绪紧张。此外,尽管这是一项艰巨的工作,为生病的亲戚提供护理的家庭成员从未放弃,引用责任,家庭的重要性,和宗教信仰是这样做的主要动机。
    结论:绝症亲属的家庭照料角色的困难和要求是复杂和多因素的。调查结果呼吁对家庭护理人员进行多学科的专业关注,并采取从整体上支持他们生活的政策。
    BACKGROUND: Terminal illness is an irreversible illness that, without life-sustaining procedures, usually results in death or permanent disability from which recovery is unlikely. When involved, family caregivers are believed to improve health outcomes, such as reduced hospitalization, and establishing a patient\'s initial access to professional treatment services. However, caring for a patient with a terminal illness is viewed as one of the most difficult aspects of providing care. This study aimed to identify the challenges, and coping strategies developed by family caregivers to cope with the care of the terminally ill person.
    METHODS: An exploratory descriptive qualitative approach was used. Twenty (20) family caregivers voluntarily participated in the study from the Korle-Bu Teaching Hospital. Semi-structured interviews were conducted with the participants. The transcribed interviews were then analysed using thematic analysis.
    RESULTS: From the analysis, three main themes emerged: challenges, coping strategies, and social support. These themes encompassed sixteen subthemes including financial burden, bad health conditions, faith and prayer, and support from health professionals. From the study, both male and female family caregivers narrated that providing care for sick relatives undergoing terminal disease is characterized as a daily duty demanding one\'s time and fraught with emotional strain. In addition, even though it was a difficult job, family members who provided care for ailing relatives never gave up, citing responsibility, the importance of family, and religious beliefs as the primary motivations for doing so.
    CONCLUSIONS: The difficulties and demands of family caregiving roles for terminally ill relatives are complex and multifactorial. The findings call for multidisciplinary professional attention for family caregivers and policies that will support their lives holistically.
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  • 文章类型: Journal Article
    目标:医生和护士在具有挑战性的临终护理(EOL)任务中处于中心地位,这项研究旨在探索和描述医生和护士对癌症患者生命终结的认识和认可的经验。
    方法:定性,基于半开放式访谈指南,进行了个人访谈的探索性研究设计。采访了挪威大学一家医院在内科或外科部门工作的6名医生和6名护士。访谈采用定性内容分析进行分析。
    结果:这项研究的发现强调,识别和承认癌症患者处于生命终结状态是一个具有挑战性的过程。分析中出现了三个子主题;经历的意义,组织结构的重要性,以及共同理解的重要性。进一步分析了一个主要主题,并从子主题中抽象出来;安全地管理识别和承认生命终结的平衡行为。
    结论:在EOL设置中存在很多风险,和医疗保健专业人员(HCP)必须平衡有关EOL决策的几个方面。在这些情况下取得适当的平衡是具有挑战性的。HCP需要通过与,和支持,同事们,支持组织结构和经验。加强安全网将对改善临床实践产生明显影响,以减少徒劳的治疗,并为医院中所有垂死的患者提供高质量的EOL护理。
    OBJECTIVE: Doctors and nurses are central in the challenging task of end-of-life (EOL) care, and this study aims to explore and describe doctors\' and nurses\' experiences of recognition and acknowledgment of the end of life for patients with cancer.
    METHODS: A qualitative, explorative research design with individual interviews was carried out based on a semi-open interview guide. A total of 6 doctors and 6 nurses working in medical or surgical departments at a Norwegian University hospital were interviewed. The interviews were analyzed using qualitative content analysis.
    RESULTS: The study\'s findings highlight that recognizing and acknowledging patients with cancer as being at end-of-life is a challenging process. Three subthemes emerged from the analysis; the significance of being experienced, the significance of organizational structures, and the significance of having a common understanding. A main theme was analyzed further and abstracted from the subthemes; Being safe to manage the balancing act of recognizing and acknowledging the end of life.
    CONCLUSIONS: Much is at stake in the EOL setting, and healthcare professionals (HCP) must balance several aspects regarding EOL decisions. Striking the right balance in these situations is challenging. HCPs need a safety net through collaboration with, and support from, colleagues, supporting organizational structures and experience. Strengthening the safety net will have a clear impact on improving clinical practice to reduce futile treatment and provide high-quality EOL care for all dying patients in hospitals.
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  • 文章类型: Journal Article
    背景:非亲属照顾者的角色,比如朋友,邻居,和熟人,在提供临终关怀方面意义重大,但在研究和政策讨论中往往被忽视。这些护理人员为临终关怀的个人提供广泛的支持,除了或代替家庭成员。然而,文献中关于这些经历的证据有限,负担,和非亲属照顾者的好处。
    目的:这项研究的目的是研究非亲属护理人员在临终关怀中的作用和贡献。这项研究旨在揭示他们的经历,相关挑战,好处,和支持要求。
    方法:为了实现这一目标,将采用混合方法,通过约150名非亲属护理人员的结构化问卷和多达25名参与者的深度访谈收集数据。问卷将衡量影响,负担,和照顾的好处。家庭照顾者的负担量表,作为照顾者规模的好处,家庭需求清单,积极心理健康量表,a图形接近度,和选定项目的Eurofamcare共同评估工具的社会人口和护理相关数据将被使用。将使用IBMSPSSStatistics28对定量数据进行分析,以进行描述性分析和分组比较。定性深入访谈的目的是全面了解个人经历,非亲属护理人员队列成员的动机和支持需求,在性别方面尽可能不同的人,社会经济地位,和设施与德语。访谈的定性数据将使用MAXQDA软件进行检查,采用扎根理论的方法进行分析。
    结论:这项研究将开发一个全面的框架,以捕获非亲属护理人员在生命末期的细微差别经历。该框架将确定缺乏对非亲属护理人员的支持以及需要进一步研究的领域。
    背景:该研究在德国临床试验注册(DeutschesRegisterKlinischerStudien)(注册N°DRKS00033889;注册日期:2024年4月5日)中进行了前瞻性注册。该研究可在世界卫生组织的国际临床试验注册平台搜索门户下进行搜索,在德国临床试验登记号下。
    BACKGROUND: The role of non-kin caregivers, such as friends, neighbours, and acquaintances, in providing end-of-life care is significant but often overlooked in research and policy discussions. These caregivers provide extensive support for individuals in end-of-life care, in addition to or instead of family members. However, there is limited evidence in the literature regarding the experiences, burdens, and benefits of non-kin caregivers.
    OBJECTIVE: The aim of this research is to examine the role and contributions of non-kin caregivers in end-of-life care. The study intends to uncover their experiences, associated challenges, benefits, and requirements for support.
    METHODS: In order to achieve this objective, a mixed-methods approach will be employed, gathering data through structured questionnaires from approximately 150 non-kin caregivers and in-depth interviews with up to 25 participants. The questionnaires will measure the impact, burden, and benefits of caregiving. The Burden Scale for Family Caregivers, the Benefits of Being a Caregiver Scale, the Family Inventory of Needs, the Positive Mental Health Scale, a Graphic Closeness Scale, and selected items of the Eurofamcare Common Assessment Tool for socio-demographic and caregiving-related data will be used. Quantitative data will be analysed using IBM SPSS Statistics 28 for descriptive analysis and group comparison. The objective of the qualitative in-depth interviews is to obtain a comprehensive picture of the personal experiences, motivations and support needs of members of the non-kin caregivers cohort, who are as heterogeneous as possible in terms of gender, socio-economic status, and facility with the German language. The qualitative data from the interviews will be examined using MAXQDA software, adopting a grounded theory approach for analysis.
    CONCLUSIONS: This research will develop a comprehensive framework that captures the nuanced experiences of non-kin caregivers at the end of life. The framework will identify areas where support for non-kin caregivers is lacking and where further research is needed.
    BACKGROUND: The study was prospectively registered in the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00033889; date of registration: 05 April 2024). The study is searchable under the International Clinical Trials Registry Platform Search Portal of the World Health Organization, under the German Clinical Trials Register number.
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  • 文章类型: Journal Article
    临终谵妄影响绝大多数患者在死亡前。这是非常痛苦的,往往与不安或激动有关。与其他环境中的谵妄不同,它被认为是不可逆转的,和非药物措施可能不太可行。这篇综述的目的是对姑息治疗环境中谵妄的临床试验进行深入讨论,特别关注研究药物干预治疗临终谵妄的研究。迄今为止,只有六项随机试验研究了姑息治疗人群的药理学选择,只有两个人专注于临终谵妄。这些研究表明,精神安定药和苯并二氮卓类可能有助于控制与临终谵妄相关的终末躁动或躁动。然而,现有研究在方法学上有很大的局限性.需要进一步的研究来证实这些发现,并研究新的治疗方案来管理这种令人痛苦的综合征。
    End-of-life delirium affects a vast majority of patients before death. It is highly distressing and often associated with restlessness or agitation. Unlike delirium in other settings, it is considered irreversible, and non-pharmacologic measures may be less feasible. The objective of this review is to provide an in-depth discussion of the clinical trials on delirium in the palliative care setting, with a particular focus on studies investigating pharmacologic interventions for end-of-life delirium. To date, only six randomized trials have examined pharmacologic options in palliative care populations, and only two have focused on end-of-life delirium. These studies suggest that neuroleptics and benzodiazepines may be beneficial for the control of the terminal restlessness or agitation associated with end-of-life delirium. However, existing studies have significant methodologic limitations. Further studies are needed to confirm these findings and examine novel therapeutic options to manage this distressing syndrome.
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  • 文章类型: Journal Article
    背景:姑息治疗和健康与社会护理的整合已逐渐成为解决人口老龄化和老年人生命末期多重性负担的发展重点方向。
    目的:探讨在健康和社会护理综合机构中,对绝症患者的家庭成员提供姑息治疗和稳定治疗的益处/有效性。
    方法:这项前瞻性观察性研究是在健康和社会护理综合机构进行的。纳入230名接受姑息治疗的绝症患者及其家庭成员。在姑息治疗过程中,对患者家属进行问卷调查和量表,包括生活质量(SF-8),家庭负担(FBSD,CBI),焦虑(HAMA),和遇险(DT)。我们使用配对t检验和相关性分析来分析与我们的研究问题有关的数据。
    结果:在卫生和社会护理综合机构中,姑息治疗能有效提高生活质量,减轻家庭负担,减轻绝症患者家属的心理影响。姑息治疗是影响患者生活质量的独立因素,家庭负担,和心理社会地位。独立于患者相关和家庭相关因素,结果稳定、适用性广。
    结论:这些发现强调了姑息治疗的可用性和稳定性,以及老年人健康和社会护理综合服务模式的普及。
    BACKGROUND: Palliative care and the integration of health and social care have gradually become the key direction of development to address the aging of the population and the growing burden of multimorbidity at the end of life in the elderly.
    OBJECTIVE: To explore the benefits/effectiveness of the availability and stability of palliative care for family members of terminally ill patients in an integrated institution for health and social care.
    METHODS: This prospective observational study was conducted at an integrated institution for health and social care. 230 patients with terminal illness who received palliative care and their family members were included. Questionnaires and scales were administered to the family members of patients during the palliative care process, including quality-of-life (SF-8), family burden (FBSD, CBI), anxiety (HAMA), and distress (DT). We used paired t-tests and correlation analyses to analyze the data pertaining to our research questions.
    RESULTS: In the integrated institution for health and social care, palliative care can effectively improve quality of life, reduce the family\'s burden and relieve psychological impact for family members of terminally ill patients. Palliative care was an independent influencing factor on the quality of life, family burden, and psychosocial status. Independently of patient-related and family-related factors, the results are stable and widely applicable.
    CONCLUSIONS: The findings underline the availability and stability of palliative care and the popularization of an integrated service model of health and social care for elder adults.
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  • 文章类型: Systematic Review
    患有绝症的人面临更高的财务不安全风险。金融不安全定义的差异,除了对这一人群福祉的影响之外,尚未进行系统分析。
    要理解定义,患病率和财务不安全对患有绝症的人的身心健康的影响。
    带有叙述性综合的系统综述(预期注册;CRD42023404516)。
    Medline,Embase,CINAHL,AMED,PsycINFO,ProQuest中央和Cochrane中央受控试验登记册,从成立到2023年5月。纳入的研究必须衡量或描述财务不安全对参与者身体或心理健康的影响。使用Hawker工具评估研究质量。
    共26项研究纳入本综述。金融不安全是使用许多不同的定义和术语来定义的。在4824名参与者中,1126(23%)报告经历了高度的财务不安全。9项研究报告了21项独特的分析,涉及身体健康的三个领域。在这21项分析中,10(48%)报告了负面结果(据报道,财务不安全状况增加,身体健康下降)。21项研究报告了针对心理健康的9个领域的51项独特分析。在这些分析中,35(69%)的人报告了负面结果(据报道,财务不安全感增加,心理健康下降)。
    患有绝症的人需要对其财务状况的支持,以确保他们的福祉不会受到财务不安全的负面影响。
    UNASSIGNED: People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed.
    UNASSIGNED: To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness.
    UNASSIGNED: A systematic review with a narrative synthesis (prospectively registered; CRD42023404516).
    UNASSIGNED: Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants\' physical or mental well-being. Study quality was assessed using the Hawker tool.
    UNASSIGNED: A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being).
    UNASSIGNED: People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.
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  • 文章类型: Journal Article
    背景:谵妄是临终关怀中的一个重要问题。使用客观方法连续监测搅拌水平可能比现有的测量尺度具有优势。
    目的:研究使用非穿戴式传感器(NemuriSCAN[NSCAN])测量的活动评分的客观测量是否与使用改良的里士满激动镇静量表(RASS)测量的激动水平相关。
    方法:我们进行了单中心,prospective,在姑息治疗病房进行观察性研究,使用NSCAN测量活动评分,使用RASS评估躁动水平。RASS评分是由对NSCAN变量不知情的病房护士前瞻性测量的。创建了一个数据库,以在同一天晚上将RASS分数和活动分数配对。
    结果:在观察期间,1209例患者住院,分析了971例患者的3028对评估结果。NSCAN活动分数随着RASS分数的增加而显着增加(Jonckheere-Terpstra测试,p<0.001)。每个RASS评分的活动评分的平均值为RASS-5,28.9;RASS-4,36.4;RASS-3,41.7;RASS-2,57.4;RASS-1,58.8;RASS0,62.6;RASS1,79.6;RASS2,106.5;和RASS3,118.7。
    结论:NSCAN活动与改良的RASS躁动评分显著相关。关于躁动的实时NSCAN数据可能有助于及时干预以实现最佳症状控制。为了改善患有晚期谵妄的患者的预后,有必要对监测工具进行更多研究。
    BACKGROUND: Delirium is a significant concern in end-of-life care. Continuous monitoring of agitation levels using objective methods may have advantages over existing measurement scales.
    OBJECTIVE: To examine whether an objective measure of activity scores measured using a sheet-type non-wearable sensor (Nemuri SCAN [NSCAN]) was correlated with agitation levels measured using the modified Richmond Agitation-Sedation Scale (RASS) in terminally ill patients with cancer.
    METHODS: We conducted a single-center, prospective, observational study in a palliative care unit using the NSCAN to measure activity scores and the RASS to assess agitation levels. RASS scores were prospectively measured by ward nurses blinded to the NSCAN variables. A database was created to pair the RASS scores and activity scores at night on the same day.
    RESULTS: During the observation period, 1209 patients were hospitalized, and 3028 pairs of assessments of 971 patients were analyzed. The NSCAN activity scores significantly increased with increasing RASS scores (Jonckheere-Terpstra test, p < 0.001). The mean values of the activity scores for each RASS score were RASS -5, 28.9; RASS -4, 36.4; RASS -3, 41.7; RASS -2, 57.4; RASS -1, 58.8; RASS 0, 62.6; RASS 1, 79.6; RASS 2, 106.5; and RASS 3, 118.7.
    CONCLUSIONS: The NSCAN activity significantly correlated with modified RASS agitation scores. Real-time NSCAN data on agitation may aid timely interventions for optimal symptom control. To improve outcomes for patients suffering from terminal delirium, more research on monitoring tools is warranted.
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