Laranjeira Carlos, Dixe Maria Dos Anjos, Coelho Alexandra, Reigada Carla, Carneiro Rui, Querido Ana
School of Health Sciences, Polytechnic University of Leiria, Leiria, Portugal.
Centre for Innovative Care and Health Technology (ciTechCare), Polytechnic University of Leiria, Leiria, Portugal.
Front Public Health. 2025 Jun 2;13:1596657. doi: 10.3389/fpubh.2025.1596657. eCollection 2025.
In palliative care (PC), family caregivers (FCs) play an important role in managing patient symptoms and addressing patient needs. In end-of-life (EoL), FCs frequently experience distress that exacerbates emotional strain and complicates grieving. Training FCs to care for palliative patients should be implemented urgently, enhancing their preparation, reducing their burden, and assuring Quality of Life (QoL) throughout illness progression. Recent research has highlighted a global shift toward death in the community, in line with patient preferences. In contrast, the Portuguese reality reveals a tendency to die in hospitals and an absence of community PC and support for FCs, a model that might not be sustainable in the future.
The overall aim of this study is to comprehensively assess the unmet needs of FCs in home-based PC settings and their experiences interacting with PC services, and to propose strategies and recommendations for FC advocacy in PC.
A multi-stage mixed-methods design will be used, divided into four main phases. Phase I will identify unmet needs and profile FCs through a quantitative cross-sectional analysis of a nationally representative sample. Phase II will develop a qualitative study to understand the role and impact of FCs providing PC and their experiences with support from PC services. This will help generate ideas for more accessible and sustainable PC-in-place. Phase III will comprise a multi-phased, consensus-based approach to identify priority areas of need, as decided by FCs and professionals, and develop a short Caregivers Assessment Tool (CAT). Lastly, phase IV will synthesize the results and produce a white book for FC advocacy in PC.
The project will enrich community PC while optimizing social welfare activities. By identifying the unmet requirements of FCs of PC patients, the initiative will enhance the QoL and well-being of the care recipients, respecting their preferences, while improving the health and competence of FCs, and minimizing the consumption of hospital resources. Lastly, FC engagement should be coordinated and sustainably executed through the participation of relevant all stakeholders.
在姑息治疗（PC）中，家庭照顾者（FCs）在管理患者症状和满足患者需求方面发挥着重要作用。在生命末期（EoL），家庭照顾者经常经历痛苦，这加剧了他们的情感压力，使悲伤过程变得复杂。迫切需要对家庭照顾者进行照顾姑息患者的培训，以增强他们的准备能力，减轻他们的负担，并在疾病进展过程中确保生活质量（QoL）。最近的研究强调了全球范围内符合患者偏好的向社区死亡的转变。相比之下，葡萄牙的实际情况显示出在医院死亡的趋势，缺乏社区姑息治疗以及对家庭照顾者的支持，这种模式在未来可能无法持续。
本研究的总体目标是全面评估居家姑息治疗环境中家庭照顾者未得到满足的需求以及他们与姑息治疗服务互动的经历，并提出在姑息治疗中为家庭照顾者进行倡导的策略和建议。
将采用多阶段混合方法设计，分为四个主要阶段。第一阶段将通过对具有全国代表性的样本进行定量横断面分析来确定未满足的需求并描述家庭照顾者的特征。第二阶段将开展一项定性研究，以了解家庭照顾者提供姑息治疗的角色和影响以及他们在姑息治疗服务支持下的经历。这将有助于为更易获得和可持续的就地姑息治疗产生想法。第三阶段将包括一种多阶段、基于共识的方法，以确定家庭照顾者和专业人员确定的优先需求领域，并开发一个简短的照顾者评估工具（CAT）。最后，第四阶段将综合研究结果并编写一本关于在姑息治疗中为家庭照顾者进行倡导的白皮书。
该项目将丰富社区姑息治疗，同时优化社会福利活动。通过确定姑息治疗患者家庭照顾者未满足的需求，该倡议将提高受照顾者的生活质量和幸福感，尊重他们的偏好，同时改善家庭照顾者的健康状况和能力，并尽量减少医院资源的消耗。最后，应通过相关所有利益攸关方的参与来协调并可持续地开展家庭照顾者的参与工作。
