End of Life Care

Understanding the End of Life Needs of CALD and Aboriginal Communities in Western Sydney Local Health District

  • Investigators: Professor Debbie Horsfall, Professor Rosemary Leonard, Dr Joy Paton
  • Funding: $300 000 over 2 years. Funded by Western Sydney LHD

The research is a joint project between Western Sydney Local Health District (WSLHD) and Western Sydney University’s (WSU) Caring at End of Life Research Team. It is a project in two stages. In stage one we will be using multiple methods, including the Death Literacy Index (previously developed by this research team), focus groups, in-depth interviews and photo-voice to develop our understandings of culturally and linguistically diverse (CALD) and Aboriginal people’s experiences of death, dying and caring and their needs, if any, for support and services. Elders of the relevant communities will work with us as co-developers of the research design. Informed by the findings of stage one stage two is the co-design of culturally appropriate, and safe, models of palliative care and support for Aboriginal and CALD communities. We are cognisant of the fact that Indigenous and CALD groups have been endlessly studied, with much of the research to date, either deliberately or inadvertently, adopting colonial assumptions, thus reinforcing power imbalances between the researchers and the researched (West et al., 2012). Some communities have described this approach as ‘structural violence’ (Atkinson, 2002). To help address this, the methodology is strongly informed by principles to assist in developing ethical practices for culturally safe research within Aboriginal and CALD communities. Participants in the research will have the opportunity to be part of the co-design work including the writing of the research report and the generation of recommendations. A book of photographs and narratives co-generated through the in-depth interviews will also be published alongside the more traditional research report. Individuals from each community will also have the opportunity to be co-researches as desired.

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