Life-threatening illness

危及生命的疾病
  • 文章类型: Journal Article
    化疗引起的周围神经病变(CIPN)和相关疼痛是儿科癌症治疗的普遍不良反应,显著影响患者的生活质量。其影响和风险因素在我国尚待评估。本研究旨在评估CIPN的患病率和临床特征,以及探索与患者和治疗相关变量的关联,在一组阿根廷儿科肿瘤患者中。这项观察性研究包括66例诊断为恶性造血系统肿瘤并接受神经毒性药物长春新碱的患者。分析的变量包括年龄,性别,人体测量,肿瘤类型,化疗治疗,疼痛和其他症状的发展,严重程度,和镇痛治疗。研究人群由39名男孩和27名女孩组成。大多数患者接受了两种或三种神经毒性药物。在15名儿童中发现了与CIPN一致的症状,反映了23%的患病率。主要症状是下肢疼痛,一些患者报告下颌或全身疼痛。60%和27%的病例将疼痛分为中度或重度,分别。NSAIDs,抗惊厥药,和/或阿片类药物被处方。在被分析为潜在危险因素的患者和治疗相关变量中,长春新碱联合阿糖胞苷的使用和更多数量的神经毒性药物的给药显示与CIPN的发展显著相关.
    结论:联合治疗是临床CIPN的危险因素。中度/重度疼痛的高患病率强调了密切警惕的重要性,因为它有可能损害患者的整体幸福感。
    背景:•化疗诱导的周围神经病变(CIPN)是儿科癌症治疗中常见的不良反应和剂量限制因素。•患病率因地区而异,风险因素仍在研究中。
    背景:•在阿根廷转诊医院接受造血肿瘤治疗的儿科患者中,症状性CIPN的患病率为23%。大多数患者报告中度或重度疼痛。•将长春新碱与阿糖胞苷结合并在联合治疗中使用更多的神经毒性药物与CIPN相关症状的发展显着相关。
    Chemotherapy-induced peripheral neuropathy (CIPN) and associated pain are prevalent adverse effects of pediatric cancer treatment, significantly affecting the patient\'s quality of life. Their impact and risk factors have yet to be assessed in our country. This study aimed to assess the prevalence and clinical characteristics of CIPN, as well as to explore associations with patient- and treatment-related variables, within a cohort of Argentinean pediatric oncology patients. Sixty-six patients diagnosed with malignant hematopoietic tumors and receiving the neurotoxic agent vincristine were included in this observational study. Variables analyzed included age, gender, anthropometric measurements, tumor type, chemotherapy treatment, development of pain and other symptoms, severity, and analgesic treatment. The study population consisted of 39 boys and 27 girls. Most patients received two or three neurotoxic drugs. Symptoms consistent with CIPN were identified in 15 children, reflecting a prevalence of 23%. The main symptom was pain in the lower limbs, with some patients reporting jaw or generalized body pain. Pain was categorized as moderate or severe in 60% and 27% of cases, respectively. NSAIDs, anticonvulsants, and/or opioids were prescribed. Among the patient- and treatment-related variables analyzed as potential risk factors, the use of vincristine in conjunction with cytarabine and the administration of a higher number of neurotoxic drugs demonstrated significant association with the development of CIPN.
    CONCLUSIONS: Combination therapy stands out as a risk factor for clinical CIPN. The high prevalence of moderate/severe pain underscores the importance of close vigilance given its potential to compromise the patient\'s overall well-being.
    BACKGROUND: • Chemotherapy-induced peripheral neuropathy (CIPN) is a frequent adverse effect and dose-limiting factor in pediatric cancer treatment. • Prevalence varies among regions and risk factors are still under study.
    BACKGROUND: • Prevalence of symptomatic CIPN is 23% among pediatric patients undergoing treatment for hematopoietic tumors in a referral hospital in Argentina. Most patients report moderate or severe pain. • Combining vincristine with cytarabine and using a higher number of neurotoxic drugs in combination therapies exhibit significant association with the development of CIPN-related symptoms.
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  • 文章类型: Journal Article
    背景:在儿童姑息治疗中,术语\"喘息\"是指提供给患有限制生命的疾病的儿童的主要照顾者的临时休息。这项研究的目的是评估从Lumina协会的临时护理服务中受益的父母的看法,培根临终关怀单位及其可以改善其心理情绪状态的好处。
    方法:该研究包括定量研究,涉及34位父母/照顾者,他们回答了包含26个问题的问卷,和定性研究涉及组织一个焦点小组,有12名受益于临时服务的父母。
    结果:使用喘息服务与主要护理人员的心理情绪困扰显着减少有关;91%的受访者表示,这种类型的服务降低了心理情绪压力的水平。
    结论:研究中的所有参与者都证实,喘息的最重要益处是获得照顾家庭和健康的时间。喘息服务的发展可以降低情绪疲惫和心理健康问题的风险。
    BACKGROUND: In children\'s palliative care, the term \"respite\" refers to a temporary break offered to primary caregivers of a child with a life-limiting illness. The aim of this study was to assess the perceptions of parents who have benefited from respite care services in the Lumina Association, Bacău hospice unit and the benefits it can bring in improving their psycho-emotional state.
    METHODS: The study consisted of quantitative research involving 34 parents/caregivers who responded to a questionnaire with 26 questions, and qualitative research which involved the organization of a focus group with 12 parents who benefited from respite services.
    RESULTS: The use of respite services was associated with a significant reduction of psycho-emotional distress on the part of primary caregivers; 91% of respondents said that this type of service reduces the level of psycho-emotional stress.
    CONCLUSIONS: All participants in the study confirmed that the most important benefit of respite is the time gained to care for family and health. The development of respite services could reduce the risk of emotional exhaustion and mental health problems.
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  • 文章类型: Journal Article
    背景:医疗保健专业人员面临的主要挑战之一是了解患者对如何以及何时发布坏消息的偏好,以及在严重的医学诊断或预后中应该披露多少信息。有时,病人不接受严重的医疗诊断或预后。在埃塞俄比亚的姑息治疗环境中,关于突发坏消息的文化偏好缺乏证据。因此,有必要了解周围的文化问题,以正确传达坏消息。该研究的目的是探索埃塞俄比亚患者在姑息治疗环境中接受坏消息的文化偏好。
    方法:定性研究方法和非概率,采用目的抽样法。在数据收集期间,采用了深入访谈来收集八名被诊断患有癌症和患有HIV/AIDS的癌症的患者的数据。采用了专题分析来确定主题和次主题。将数据逐字转录并使用ATLAS进行分析。ti22计算机软件。
    结果:本研究中出现并报告了以下三个主题:(1)对危及生命的疾病的看法:宗教价值观和仪式对于建立对危及生命的疾病的观点和接受坏消息的偏好至关重要。(2)与危及生命的疾病的经历:研究参与者的经验与打破坏消息的方法是可悲的,他们没有得到关于他们医疗状况的足够细节。做出适当的决定,履行宗教信仰条例,避免不必要的成本被概述为收到坏消息的好处。(3)打破坏消息的首选方法;调查结果显示,提供坏消息的和蔼可亲和感同身受的方法是首选。有人建议,在收到坏消息时,家庭成员的存在至关重要。
    结论:患者选择在家人在场的情况下被告知他们的医疗状况。然而,病人接受坏消息的需要没有得到满足。患者应参与治疗决策过程。传递坏消息需要定制首选方法,文化价值观,和宗教信仰。根据患者的喜好传递坏消息有助于在姑息治疗中实现他们的愿望。
    BACKGROUND: One of the major challenges for healthcare professionals relates to awareness of patients\' preferences relative to how and when to break bad news and how much information should be disclosed in the eventuality of a serious medical diagnosis or prognosis. On occasions, a serious medical diagnosis or prognosis is withheld from the patient. There is a scarcity of evidence about cultural preferences regarding breaking bad news in the palliative care setting in Ethiopia. Therefore, it is necessary to understand the surrounding cultural issues to properly convey bad news. The purpose of the study was to explore Ethiopian patients\' cultural preferences for receiving bad news in a palliative care setting.
    METHODS: A qualitative research approach and nonprobability, purposive sampling method were applied. In-depth interviews were employed to collect data from eight patients who were diagnosed with cancer and cancer with HIV/AIDS during the time of data collection. Thematic analysis was applied to identify themes and subthemes. The data were transcribed verbatim and analysed using ATLAS.ti 22 computer software.
    RESULTS: The following three themes emerged and are reported in this study: (1) Perceptions about life-threatening illness: religious values and rituals are essential for establishing perspectives on life-threatening illnesses and preferences in receiving bad news. (2) Experiences with life-threatening illness: study participants\' experience with the method of breaking bad news was sad, and they were not provided with sufficient details about their medical condition. Making appropriate decisions, fulfilling the ordinance of religious faith, and avoiding unnecessary costs were outlined as benefits of receiving bad news. (3) Preferred ways of breaking bad news; the findings revealed that incremental, amiable and empathic methods for delivering bad news were preferred. It was suggested that the presence of family members is crucial when receiving bad news.
    CONCLUSIONS: Patients choose to be told about their medical conditions in the presence of their family. However, the patient\'s needs for receiving bad news were unmet. Patients should be involved in the treatment decision process. Delivery of bad news needs to tailor the preferred methods, cultural values, and religious beliefs. Delivering bad news according to the patients\' preferences helps to fulfil their wishes in palliative care.
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  • 文章类型: Journal Article
    为危及生命的疾病患者提供姑息治疗需要不同医疗保健提供者的多学科努力。确定态度,知识,药剂师在沙特阿拉伯提供这项服务的意图至关重要。因此,这项研究旨在确定姑息治疗知识,意图,态度,主观规范,以及对药剂师的行为控制以及哪些因素可以预测他们的意图。基于计划行为理论的横断面问卷分发给医院和社区药房的药剂师。其中包括测量姑息治疗知识的项目,态度,意图,主观规范,以及药剂师的行为控制,并确定了其他社会人口统计学和药学实践相关项目。总的来说,131名药剂师完成了问卷,显示姑息知识的平均得分(8.82±1.96;范围:1-14),强烈意向(5.84±1.41;范围:1-7),积极态度(6.10±1.47;范围:1-7),积极的主观规范(5.31±1.32;范围:1-7),和积极的感知行为控制(5.04±1.21;范围:1-7)。完成药房住院医师计划后,每周工作时间更长,有更积极的态度,感觉更强的主观规范与提供姑息治疗服务的强烈意愿显着相关。因此,使和激励药剂师完成药房住院医师计划并改善他们的态度可能会增加他们提供这些服务的意图。
    Providing palliative care to patients with life-threatening illnesses requires multidisciplinary efforts from different healthcare providers. Identifying the attitude, knowledge, and intentions of pharmacists to provide this service in Saudi Arabia is essential. Therefore, this study aimed to identify the palliative care knowledge, intentions, attitudes, subjective norms, and perceived behavioural control of pharmacists and what factors predict their intentions. Cross-sectional questionnaires based on the theory of planned behaviour were distributed to pharmacists in hospitals and community pharmacies. They included items that measured palliative care knowledge, attitudes, intentions, subjective norms, and the perceived behavioural control of pharmacists and identified other sociodemographic and pharmacy-practice-related items. In total, 131 pharmacists completed the questionnaires, showing an average score on palliative knowledge (8.82 ± 1.96; range: 1-14), strong intentions (5.84 ± 1.41; range: 1-7), positive attitudes (6.10 ± 1.47; range: 1-7), positive subjective norms (5.31 ± 1.32; range: 1-7), and positive perceived behavioural control (5.04 ± 1.21; range: 1-7). Having completed a pharmacy residency program, working longer hours per week, having a more positive attitude, and perceived stronger subjective norms were significantly associated with a strong intention to provide palliative care services. Therefore, enabling and motivating pharmacists to complete pharmacy residency programs and improve their attitudes could increase their intentions to provide these services.
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  • 文章类型: Journal Article
    对于正统犹太患者来说,一般的姑息治疗,尤其是拒绝和撤回治疗与当前宗教习俗的某些方面存在潜在冲突。本文介绍了相关的文化背景,并总结了犹太法律的相关原则,以帮助临床医生为其犹太患者提供适当的护理。
    For Orthodox Jewish patients, palliative care in general and withholding and withdrawing treatment in particular pose potential conflicts with some aspects of current religious practice. This article gives an introduction to the relevant cultural context and summarises the relevant principles of Jewish law to help clinicians provide appropriate care for their Jewish patients.
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  • 文章类型: Systematic Review
    背景:恐怖管理理论(TMT)认为,人们通过文化世界观提供的意义和自尊提供的个人价值感来管理与死亡有关的焦虑。虽然大量研究支持了TMT的核心主张,很少有研究将其应用于绝症患者。如果TMT可以帮助医疗保健提供者更好地了解信仰系统如何适应和改变危及生命的疾病,以及它们在处理与死亡有关的焦虑中所起的作用,它可以提供有关如何在临终治疗期间改善沟通的指导。因此,我们开始回顾现有的研究文章,重点描述TMT与危及生命的疾病之间的关系.
    方法:我们回顾了PubMed,PsycINFO,谷歌学者,和EMBASE至2022年5月,用于专注于TMT和危及生命的疾病的原创研究文章。如果直接将TMT原则纳入到有威胁生命的疾病的相关人群中,则仅根据标题和摘要筛选结果,其次是对候选文章的全面审查。还扫描了参考文献。文章进行了定性评估。
    结果:发表了六篇相关和原创的研究文章,为TMT在危重病中的应用提供了不同程度的支持,每篇文章都详细说明了与TMT预测一致的意识形态变化的证据。建立自尊,增强生活的体验是有意义的,结合灵性,吸引家庭成员,和照顾病人在家里可以更好地保持意义和自尊的策略支持的研究,并作为进一步研究的起点。
    结论:这些文章表明,将TMT应用于危及生命的疾病可以帮助识别可能有效减少死亡困扰的心理变化。这项研究的局限性包括一组异质性的相关研究和定性评估。
    BACKGROUND: Terror management theory (TMT) posits that people manage death-related anxiety through the meaning provided by their cultural world-views and the sense of personal value provided by self-esteem. While a large body of research has supported the core propositions of TMT, little research has focused on its application to individuals with terminal illness. If TMT can help healthcare providers better understand how belief systems adapt and change in life-threatening illness, and the role they play in managing death-related anxiety, it may provide guidance on how to improve communication around treatments near the end of life. As such, we set out to review the available research articles that focus on describing the relationship between TMT and life-threatening illness.
    METHODS: We reviewed PubMed, PsycINFO, Google Scholar, and EMBASE through May 2022 for original research articles focused on TMT and life-threatening illness. Articles were only deemed appropriate for inclusion if direct incorporation of the principles of TMT were made in reference to a population of interest whom had life-threatening illness Results were screened by title and abstract, followed by full review of candidate articles. References were also scanned. Articles were assessed qualitatively.
    RESULTS: Six relevant and original research articles were published which provide varied levels of support for TMT\'s application in critical illness, each article detailed evidence of ideological changes consistent with what TMT would predict. Building self-esteem, enhancing the experience of life as meaningful, incorporating spirituality, engaging family members, and caring for patients at home where meaning and self-esteem can be better maintained are strategies supported by the studies and serve as starting points for further research.
    CONCLUSIONS: These articles suggest that applying TMT to life-threatening illness can help identify psychological changes that may effectively minimize the distress from dying. Limitations of this study include a heterogenous group of relevant studies and qualitative assessment.
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  • 文章类型: Review
    家庭护理对于儿科护理实践至关重要,因为整个家庭都受到儿童疾病的影响。然而,人们对用于治疗目的的艺术制作以及如何使用艺术来更好地了解家庭经历知之甚少。我们的目的是研究基于艺术的干预措施和研究方法的性质,以及面临生命限制和危及生命的疾病的儿童家庭的经历,和那些失去亲人的家庭。在1999年1月至2022年5月之间发布的学术同行评审资料通过四个数据库使用关键搜索词进行检索。对25篇文章进行了分析,导致三个多方面的类别,包括社会,情感,和家庭健康。还确定了关键的优势和局限性。由于其对家庭幸福的好处,艺术创作已被纳入干预和研究。了解艺术创作的潜力可以激发护士开展此类活动,以加强家庭护理实践和研究。
    Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families\' experiences. Our purpose was to examine the nature of arts-based interventions and research methods used with, and the experiences of families of children facing life-limiting and life-threatening illnesses, and those families who are bereaved. Academic peer-reviewed sources published between January 1999 and May 2022 were retrieved via four databases using key search terms. Twenty-five articles were analyzed, resulting in three multifaceted categories including Social, Emotional, and Family Health. Critical strengths and limitations were also identified. Art making has been incorporated into interventions and research studies due to its benefits for family well-being. Understanding the potential of art making can inspire nurses to implement such activities to enhance family nursing practice and research.
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  • 文章类型: Systematic Review
    未经授权:在老年和疾病的交汇处,患有危及生命的疾病(LTI)的老年人是经常表现出韧性并寻求生命验证的群体,接受,结合过去和现在,即使在害怕失去的情况下,痛苦,生活逆境引发的死亡。生活回顾已经广泛进行,以帮助老年人提高福祉和应对负担。灵性是老年人整体幸福感的重要组成部分,尤其是那些有LTI的人。然而,很少有综述研究对这一人群的精神心理结局进行生活回顾干预的有效性进行研究.该研究的目的是检查生活回顾对患有LTI的老年人的精神心理健康的有效性。
    UNASSIGNED:根据Cochrane协作组的建议,进行了系统评价和荟萃分析。数据库搜索包括PubMed、PsycINFO,Cochrane图书馆,坎贝尔图书馆,EBSCO,CNKI,以及截至2020年3月的Airiti图书馆。还搜索并审查了相关文章的灰色文献和参考文献列表。
    未经批准:总共,34项研究纳入了抑郁症结局的系统评价和荟萃分析(n=24),生活质量(QOL)(n=10),焦虑(n=5),生活满意度(n=3),心情(n=3),冷漠(n=2),和一般幸福感(n=2)。其他精神心理结果测量包括灵性,自尊,生活的意义,希望,和一些多维仪器。这些研究在程序设计方面差异很大,内容,格式,长度,还有更多.尽管具有高度异质性,荟萃分析结果表明,标准化的平均差异有利于生活回顾在减少抑郁症,焦虑,负面情绪,与对照组相比,积极情绪和生活质量增加。
    UNASSIGNED:本综述呼吁在针对LTI老年人的干预措施中纳入更多的心理-精神福祉措施,以及在未来研究中设计严谨的研究。
    UNASSIGNED: At the intersection of old age and illness, older adults with life-threatening illnesses (LTI) are a group who often show resilience and seek validation of life, acceptance, and integration of past and now, even under the fear of loss, suffering, and dying evoked by life adversities. Life review has been widely conducted to help older adults enhance well-being and cope with burdens. Spirituality is an important part of an older adult\' overall well-being, especially for those with LTI. However, few review studies examined the effectiveness of life review interventions on psychospiritual outcomes among this population. The aim of the study was to examine the effectiveness of life review on psychospiritual well-being among older adults with LTI.
    UNASSIGNED: A systematic review with meta-analysis following the recommendations of the Cochrane Collaboration was conducted. Database searches included PubMed, PsycINFO, the Cochrane Library, the Campbell Library, EBSCO, CNKI, and the Airiti Library up to March 2020. Gray literature and reference lists from relevant articles were also searched and reviewed.
    UNASSIGNED: In total, 34 studies were included in the systematic review and the meta-analysis for outcomes of depression (n = 24), quality-of-life (QOL) (n = 10), anxiety (n = 5), life satisfaction (n = 3), mood (n = 3), apathy (n = 2), and general well-being (n = 2). Other psychospiritual outcome measures included spirituality, self-esteem, meaning in life, hope, and some multi-dimensional instruments. The studies greatly varied in program design, content, format, length, and more. Although with high heterogeneity, meta-analysis results demonstrated standardized mean differences in favor of life review in decreasing depression, anxiety, negative mood, and increasing positive mood and QOL compared with the control group.
    UNASSIGNED: This review calls for including more psycho-spiritual well-being measures among interventions for older adults with LTI, as well as studies with rigorous designs in future research.
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  • 文章类型: Journal Article
    背景:儿童时期危及生命的疾病被认为是整个家庭的危机,尤其是对母亲来说,这导致经历不同程度的悲伤和情绪行为问题。
    目的:本研究旨在从患有危及生命疾病的儿童的母亲的角度解释预期悲伤的概念。
    方法:这项定性研究是针对预期悲伤领域模型开发的顺序探索性研究的一部分,这是使用常规内容分析方法进行的。数据是通过对居住在设拉子和德黑兰的患有危及生命疾病的儿童的19名母亲进行深入的半结构化访谈收集的,他们是通过故意抽样选择的,变异最大。当数据达到饱和时,数据通过MAXQDA-10软件进行编码,并使用Graneheim和Lundman方法进行分析。
    结果:数据分析结果确定了8个子类别,包括休克,烦躁,害怕失去,感到内疚,不确定性,绝望,孤独和孤立,在没有棺材的情况下哀悼,都形成了情感剧变的主要主题。
    结论:由于即将失去孩子,母亲经历了悲伤和悲伤的不同反应,并遭受了后果,其核心是情绪剧变。因此,通过解释与预期悲伤有关的行为,可以设计有效和有效的干预措施来改善这组母亲的应对。
    BACKGROUND: Life-threatening illnesses in childhood are considered a crisis for the whole family, especially for the mother, which leads to experiencing different degrees of grief and emotional-behavioral problems.
    OBJECTIVE: The present study is conducted with the aim of explaining the concept of anticipatory grief from the perspective of the mothers of the children with life-threatening illnesses.
    METHODS: This qualitative study is part of a sequential exploratory research for model development in the field of anticipatory grief, which was conducted using conventional content analysis method. The data were collected through in-depth semi-structured interviews with 19 mothers of the children with life-threatening illnesses living in Shiraz and Tehran, who were selected through purposive sampling with maximum variation. When data saturation were achieved, the data were codified by MAXQDA-10 software and analyzed using Graneheim and Lundman\'s approach.
    RESULTS: Data analysis resulted in the identification of 8 subcategories including shock, irritability, fear of losing, feeling guilty, uncertainty, hopelessness, loneliness and isolation, and mourning without a coffin, all forming the major theme emotional upheaval.
    CONCLUSIONS: As the result of being in a situation of imminent and possible loss of her child, the mother experiences different responses of sadness and sorrow and suffers the consequences the core of which is consisted of emotional upheaval. Therefore, by explaining the behaviors related to anticipatory grief, efficient and effective interventions can be designed to improve coping among this group of mothers.
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  • 文章类型: Journal Article
    背景:越来越多的患有晚期疾病的人希望在家中死去,专业家庭护理的可及性同时下降,旨在延长工作参与的政策正在增加对家庭护理人员的依赖。这项研究旨在描述照顾危及生命的疾病患者的工作家庭护理人员的负担轨迹,并确定工作和护理中与负担随时间变化有关的因素。
    方法:在2018年7月至2020年11月期间,对17名患有危及生命疾病的患者的在职家庭护理人员进行了一到四轮半结构化访谈。将成绩单作为一个单元进行分析,以创建每个参与者的时间表。接下来,根据一段时间内的负担过程创建和分组个体负担轨迹.分析了与负担变化相关的因素,以及群体之间的异同。
    结果:将工作和临终护理结合在一起的家庭护理人员通常会感到负担。确定了照顾者负担的两个轨迹;照顾者具有持续的负担水平,而照顾者随着时间的推移负担不断增加。在整个疾病轨迹中,负担持续的家庭护理人员似乎都有倦怠的风险,但通常能够通过安排护理或工作来应对这种情况。负担越来越重的照顾者无法进行足够的调整,这通常会导致倦怠症状和病假。在这两组中,负担主要与护理状况有关。情感上的负担,死后负担的减少和事后对轨迹的不同看法被证明是重要的总体主题。
    结论:为接近生命终点的亲人提供护理通常是情感上的负担和紧张。为促进有偿工作与家庭照顾相结合,并降低倦怠的风险,更多的支持是需要从雇主和医疗保健专业人员在疾病的轨迹和死亡后。失去亲人的家庭照顾者还需要他们的主管和职业医生给予更多关注,以促进他们重返工作岗位。
    BACKGROUND: Growing numbers of people with advanced illnesses who wish to die at home, a concurrent decline in the accessibility of professional home care, and policies aiming at prolonging work participation are increasing the reliance on family caregivers. This study aimed to describe trajectories in burden of working family caregivers who care for patients with a life-threatening illness, and identify factors in work and care that are related to changes in burden over time.
    METHODS: Semi-structured interviews were held in one to four rounds between July 2018 and November 2020 with 17 working family caregivers of patients with a life-threatening illness living at home. Transcripts were analysed as a single unit to create timelines per participant. Next, individual burden trajectories were created and grouped based on the course of burden over time. Factors related to changes in burden were analysed, as well as similarities and differences between the groups.
    RESULTS: It was common for family caregivers who combine work and end-of-life care to experience a burden. Two trajectories of caregiver burden were identified; caregivers with a persistent level of burden and caregivers with an increasing burden over time. Family caregivers with a persistent level of burden seemed to be at risk for burnout throughout the illness trajectory, but were often able to cope with the situation by making arrangements in care or work. Caregivers with an increasing burden were unable to make sufficient adjustments, which often resulted in burnout symptoms and sick leave. In both groups, burden was mostly related to aspects of the care situation. The emotional burden, a decreasing burden after death and a different view on the trajectory in hindsight proved to be important overarching themes.
    CONCLUSIONS: Providing care to a loved one nearing the end of life is often emotionally burdensome and intensive. To facilitate the combination of paid work and family care, and reduce the risk of burnout, more support is needed from employers and healthcare professionals during the illness trajectory and after death. Bereaved family caregivers also warrant more attention from their supervisors and occupational physicians in order to facilitate their return to work.
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