超前思考晚期疾病的医学治疗:对来自不同种族背景的患者和家属的临终关怀计划的障碍和促进因素的定性研究。

Zoebia Islam, Kristian Pollock, Anne Patterson, Matilda Hanjari, Louise Wallace, Irfhan Mururajani, Simon Conroy, Christina Faull
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引用次数: 0

摘要

背景:本研究探讨了来自不同种族背景的临终病人及其家庭照顾者是否以及如何提前考虑病情恶化和死亡,并探讨了他们与医疗保健专业人员在临终关怀计划中的参与情况。目的:目的是解决这个问题,什么是障碍和促进不同种族的病人,家庭照顾者和保健专业人员从事临终关怀计划?设计:这是一项定性研究,包括18项以患者为中心的纵向案例研究,对19名丧亲家庭照顾者的访谈,以及50名公众和专业利益相关者对研究结果的回应。环境:研究在英国的诺丁汉郡和莱斯特郡进行。结果:主要障碍-患者的主要立场是带着希望生活,只考虑实际问题(遗嘱和葬礼)的未来,而不是死亡的事情。对一些人来说,提前计划违背了他们的信念。卫生保健专业人员似乎在人们的生活中地位不高。一些参与者表示缺乏信任,经历了一个脱节的系统,没有给予他们应有的尊重。然而,宗教和文化习俗对许多人来说是非常重要的,人们对制度如何重视和实现这些习俗感到焦虑。在一些报道中,家庭责任和社区期望是最重要的,担心被陌生人照顾是很常见的。关键促进因素-与可信赖的个人进行有效沟通,使患者感到被了解,并重视他们的信仰、家庭和社区生活。医疗保健专业人员“了解”这个人是关键。利益攸关方的答复强调需要培养保健专业人员的信心、技能和培训,利用基于研究结果的故事被视为支持这一点的有效方式。还确定了一些改变行为的技巧。局限性:它试图在样本中包括广泛的种族多样性,但作者承认并非所有群体都可以包括在内。结论:什么是好的临终关怀受到多种因素的交叉影响,包括信仰和文化。所有人都渴望个性化、富有同情心和全面的临终关怀,目前良好的姑息治疗框架支持这一点。然而,卫生保健专业人员需要额外的技能来处理复杂、敏感的沟通,并询问人们生活中可能不熟悉的方面。保健专业人员和服务机构面临的挑战是提供全面护理,以及提供全面护理所需的各种技能。未来工作:未来研究的重点:卫生专业人员如何确定患者是否/何时“准备好”讨论病情恶化和死亡?在危机中,如何才能最有效地讨论不确定的恢复和决定治疗的必要性,特别是复苏?专业人士如何认识和回应信仰和文化习俗的多样性,以及与生命终结有关的个人信仰和偏好之间的异质性?当需要翻译以提高患者的理解能力时,如何才能最有效地进行对话?资助:该项目由国家卫生和保健研究所(NIHR)卫生和社会保健提供研究方案资助,并将全文发表在《卫生和社会保健提供研究》上;第11卷第1期更多项目信息,请参见美国国立卫生研究院期刊图书馆网站。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds.

Background: This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning.

Objective: The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning?

Design: This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings.

Setting: The study was set in Nottinghamshire and Leicestershire in the UK.

Results: Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified.

Limitations: It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included.

Conclusions: What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this.

Future work: Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding?

Funding: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.

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