Translational Heath Research Institute and School of Social Sciences, Western Sydney University, Sydney, NSW, Australia.
Supportive and Palliative Care, Western Sydney Local Health District, NSW Health, Sydney, NSW, Australia.
Front Public Health. 2023 Jul 19;11:1161267. doi: 10.3389/fpubh.2023.1161267. eCollection 2023.
Concerns have been raised internationally about the palliative care needs of migrants and First Nations people. This article presents insights from research investigating the end-of-life needs of Aboriginal and culturally and linguistically diverse people living in Western Sydney, Australia. This region has a large rapidly growing, and highly diverse population and on average low socioeconomic status. The research was guided by an advisory panel made up of representatives of supportive and palliative medicine, bereavement support, Aboriginal health, and multicultural health facilities. It aimed to generate findings to support the delivery of culturally sensitive services in the public health system.
The multi-method design and the conduct of the research were informed by the literature on researching with marginalized groups which highlights the ethical considerations needed to avoid replicating past injustices. Qualitative data was generated from key informants and community focus groups.
The analysis revealed seven themes and some suggested solutions which were relevant across several themes. The seven themes were: the Need for trusted relationships; Talking about death and dying; Knowledge of key services; Decision-making and obtaining consent from the patient; Appropriate physical spaces; Cultural practices around EOL; and Language barriers.
Within each theme a variety of cultural beliefs and practices were revealed that conflicted with mainstream medical systems, indicating the need for changes in such systems. 'Compassionate Communities' was identified as a model to support the necessary changes.
国际上对移民和第一民族人群的姑息治疗需求表示关注。本文介绍了一项研究的结果，该研究调查了澳大利亚悉尼西部的原住民和文化及语言多样化人群的临终需求。该地区人口增长迅速且多样化，平均社会经济地位较低。该研究由一个咨询小组指导，小组成员包括姑息治疗、丧亲支持、原住民健康和多元文化健康机构的代表。该研究旨在提出支持在公共卫生系统中提供文化敏感服务的发现。
该多方法设计和研究的开展均以关于研究边缘化群体的文献为指导，这些文献强调了避免重复过去不公正行为所需的伦理考虑。定性数据来自主要知情人和社区焦点小组。
分析揭示了七个主题和一些跨主题相关的建议解决方案。这七个主题是：需要信任关系；谈论死亡和临终；了解关键服务；做出决策并从患者处获得同意；适当的物理空间；临终期的文化习俗；以及语言障碍。
在每个主题中，都揭示了与主流医疗体系相冲突的各种文化信仰和习俗，这表明需要对这些体系进行变革。“富有同情心的社区”被确定为支持必要变革的模式。
