A project is shedding light on the experiences of Aboriginal and Torres Strait Islander people receiving care for a life-limiting illness and during their final year of life.
The project team from Nepean Blue Mountains Local Health District (NBMLHD) said carer stories are a valuable resource that can help shape and improve palliative care and other health services.
Wiradjuri man and NBMLHD healthcare worker, Clarke Scott, said the team recognises sad news and sorry business is not a topic that's easily discussed.
"We really need the help of the Aboriginal community to tell us what has worked and what hasn't worked so we can provide the services the Aboriginal community needs," said Mr Scott.
"Thank you to the people bravely sharing their personal stories with us. By joining the study you'll be helping the rest of your mob in their time of need."
People participating in the study are interviewed via telephone or video call to help build a picture of how services are currently delivered.
All the information collected is strictly confidential and de-identified. No one reading the report will know who has been interviewed.
"Aboriginal health professionals, who are well-known in the local community, are on the project team. They can support people in the study in a sensitive and culturally appropriate way," said Mr Scott.
The project is a partnership with local Aboriginal community-controlled health organisations, the Sydney Region Aboriginal Corporation and Marrin Weejali Aboriginal Corporation.
People who have personal experience, either currently or in the past five years, are invited to contact the project team to arrange a phone or video call interview. For those preferring face-to-face interviews, the researchers can schedule a session when social distance restrictions due to COVID-19 are relaxed.
The team will work with people to make the interview experience as comfortable as possible - talking to people individually or in small family groups.
Interested people can contact: Glenda McDonald 0431 702 991 or g.e.mcdonald@westernsydney.edu.au, or Veronica Lloyd, Senior Aboriginal and Torres Strait Islander Health Worker in the Nepean Supportive and Palliative Care Service 0456 974 417 or Veronica.Lloyd@health.nsw.gov.au
The research is a collaboration with Western Sydney University. The study has been approved by the NBMLHD Human Research and Ethics Committee, Approval Number 2019/ETH13613