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

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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.