Paediatric Bioethics Centre, Great Ormond Street Hospital for Children, London, UK.
Centro de Bioética, Facultad de Medicina CAS-UDD, Santiago, Chile.
Palliat Med. 2021 Sep;35(8):1434-1451. doi: 10.1177/02692163211029514. Epub 2021 Aug 2.
Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region.
To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America.
Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool.
MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included.
Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general.
Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.
实现姑息治疗的普遍可及被认为是一项全球性和公平性优先事项。了解拉丁美洲患者和照护者对姑息治疗和临终关怀的态度和偏好对于在该地区发展以患者为中心的服务至关重要。
综合评价拉丁美洲晚期疾病患者及其照护者对姑息治疗和临终关怀的态度和偏好的证据。
混合研究系统评价，采用序贯探索性综合（主题和叙事综合）。使用混合方法评估工具评估质量。
2021 年 3 月前，通过 MEDLINE、Embase、PsychINFO、Lilacs、Web of Science、Scielo 和 Scopus 检索文献。纳入了评估患者或照护者对姑息治疗和临终关怀的态度和/或偏好的实证研究。
在筛选出的 3575 条记录中，有 45 篇文章被纳入，涉及 7 个国家，共有 1220 名患者和 965 名照护者（26.8%为非癌症相关参与者）。数据围绕以下七个主题进行组织：症状管理和营养；临终医疗决策；沟通模式；临终关怀地点和死亡；上帝和宗教团体作为希望和支持的源泉；照护者的角色；以及对姑息治疗的混合理解。主要发现包括：姑息治疗和疼痛缓解方面存在矛盾的观点；患者希望了解自己的病情，但照护者不愿与患者讨论这一点；共同偏好共同决策；以及负担过重的照护者缺乏专业的家庭护理支持。总体而言，研究方法存在缺陷。
核心主题为在拉丁美洲提供了特定文化背景下的证据，为设计文化敏感的姑息治疗和临终关怀服务、模式和公共政策提供了依据。
