Pellerin Roxane, Tapp Diane, Filion Catherine, Castonguay-Paradis Sophie, Bravo Gina, Robert Guillaume
Faculté des sciences infirmières, Université Laval, 1050, avenue de la Médecine, Université Laval, Québec, Québec, G1V 0A6, Canada.
Réseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL), 1401, 18e Rue, Québec, Québec, G1J 1Z4, Canada.
BMC Palliat Care. 2025 Aug 22;24(1):223. doi: 10.1186/s12904-025-01862-8.
Caregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC).
Provide an overview of the existing scientific data on caregiver's knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject.
A narrative literature review was conducted to address the research question: "What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?" Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics.
Of the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices.
With the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality.
随着主要神经认知障碍患者病情进展，其失去同意能力，患有此类疾病患者的照护者常常肩负起参与有关为其亲人提供姑息治疗决策的责任。这一角色非常重要，因为照护者会影响他们所照顾对象的生活质量和预期寿命。由于他们依据自身的知识、技能、偏好和价值观做出决策，因此有必要更全面地理解这些有关姑息治疗和临终关怀（PEoLC）的概念。
概述关于照护者对姑息治疗和临终关怀的知识、态度及认知的现有科学数据，并对其进行分析，以便更深入地理解照护者在该主题上的立场。
进行了一项叙述性文献综述，以解决研究问题：“患有主要神经认知障碍患者的照护者对姑息治疗和临终关怀的知识、态度及认知是什么？”在PubMed、CINAHL和PsycINFO中进行检索，目标是2000年至2023年期间发表的涉及患有主要神经认知障碍患者的照护者对任何PEoLC主题的知识、态度或认知的文章。
在找到的900篇文章中，25篇被纳入分析。除了姑息治疗方法外，已确立的临终实践还包括预先护理计划、转院、人工营养和补液、停止治疗、姑息性镇静和医疗协助死亡。分析显示，关于各种PEoLC实践的研究数量存在差异，与其他实践相比，预先护理计划方面的数据更多。照护者对姑息治疗方法有大致了解，但对特定的PEoLC实践了解有限。虽然在姑息治疗方法的认知上有一些共识，但在PEoLC实践方面观察到矛盾的态度和认知。
随着姑息治疗服务的发展以及照护者在决策中作用和责任的增加，更深入地了解他们对PEoLC的知识、态度和认知对于更好地确定他们的支持和信息需求至关重要。随着患者病情的发展，需要进一步研究以使医疗保健专业人员能够为照护者提供有针对性的支持和教育，从而提高整体护理质量。
