Palliative care for Aboriginal and Torres Strait Islander people with end-stage renal disease: an action research initiati

在为患有肾衰竭的土著居民和托雷斯海峡岛民提供文化上适当和有效的姑息治疗方面，目前的知识存在重大差距。该项目将与小万山社区和相关的主要土著和托雷斯海峡岛民及其他机构合作审议这些问题。响应的建议由“全国土著姑息治疗需求研究”这项研究将解决缺乏一个文化上适当的模式，照顾路径的土著和托雷斯海峡岛民与先进的肾功能衰竭，使有效的知情选择姑息治疗。通过使用行动研究方法，这项研究将与土著和托雷斯海峡岛民一起考虑这些问题，同时考虑到他们的文化、精神和社会需求，以及他们的家庭、照顾者、保健人员和更广泛的社区的需求。根据土著居民和托雷斯海峡岛民以及其他主要利益攸关方的讨论和投入，预计主要关注领域将侧重于精神、生活质量、家庭、护理者和社区的作用、对肾衰竭的理解和经验、治疗方案、患者宣传系统、搬迁的必要性以及先进护理规划的潜在作用。还将实施和评估干预战略。根据土著居民和托雷斯海峡岛民以及其他主要利益攸关方的讨论和投入，预计这些讨论和投入将侧重于社区教育方案，制定文化上适当的生活质量问卷，制定和试行文化上适当的机制，使人们能够考虑先进的护理规划，并为偏远地区的患者制定和试行患者倡导程序访问大都会肾脏姑息治疗卫生服务机构。

There are significant gaps in current knowledge for providing culturally appropriate and effective palliative care for Aboriginal and Torres Strait Islander people with kidney failure. This project will consider these issues in partnership with the Kowanyama Community and the associated key Aboriginal and Torres Strait Islander and other agencies. Echoing the recommendations by the �National Indigenous Palliative Care Needs Study� this study will address the absence of a culturally appropriate model of care pathway for Aboriginal and Torres Strait Islander people with advanced kidney failure to make effective informed choices for palliative care. Through the use of action research methodology this study will engage with Aboriginal and Torres Strait Islander people to consider these issues, taking into consideration their cultural, spiritual and social needs, those of their family, carers, healthcare personnel and the wider community. Subject to discussions and input from the Aboriginal and Torres Strait Islander people and other key stakeholders it is anticipated that the key areas of interest will focus on spirituality, quality of life, role of the family, carer and community, understandings and experience of kidney failure, treatment options, patient advocacy systems, the need for relocation, and the potential role of advanced care planning. Intervention strategies will also be conducted and evaluated. Subject to discussions and input from the Aboriginal and Torres Strait Islander participants and other key stakeholders it is anticipated that these will focus on a community based education program, development of a culturally appropriate quality of life questionnaire, development and piloting of a culturally appropriate mechanism for people to consider advanced care planning and development and piloting of a patient advocacy process for those from remote areas visiting metropolitan renal - palliative care health services.