Supporting a loved one as they near the end of their life can be confronting. Palliative care is there to help but such services are not equally accessible to all Australians, particularly those in rural areas.
University of South Australia researchers are hoping to change this. In a new study, researchers are exploring the end-of-life care experiences of people living in rural South Australia, to improve access and delivery of palliative care services in rural and country areas.
Funded by The Hospital Research Foundation Group (as part the Palliative Care Research Collaboration), the 'My Story, Our Journey' project is being conducted in partnership with the University of Adelaide and Flinders University.
More than seven million Australians, almost 30% of the population, live in rural communities, yet only 16% of the palliative care workforce live and work in these areas.
UniSA researcher Shannen van der Kruk says the study is an important opportunity to understand the unique challenges faced by rural families accessing palliative care.
"Palliative care is person and family-centred care for someone with a life-limiting illness and aims to optimise their quality of life," van der Kruk says.
"It encompasses a range of emotional and physical supports, including pain relief, home-care assistance, grief support and counselling, and can be delivered by a wide range of health and community providers at any stage of illness.
"Yet people living in country or rural areas have less opportunity to receive specialist palliative care, which can significantly affect their quality of life. This is partly due to fewer medical professionals living and working in these areas, but other factors may also contribute.
"In this study, we hope to capture the real-time behaviours, experiences, and key moments that shape how and why people living with a life-limiting illness and who need assistance, make decisions about palliative care.
"The initial goal is to understand which palliative care supports are working well, the areas that need improvement, and any potential gaps; the end goal is to develop and provide valuable and timely resources to patients, families, and carers as they negotiate decisions and care at the end-of-life.
"Our research hopes to give a voice to rural patients and their families. And we're committed to finding ways to better support families at such a critical time."
The research team is now looking to talk with people living in rural areas who are facing a long-term, incurable illness - as well as their carers - to understand the expectations and experiences, challenges and benefits, needs, expected futures, and other factors that might influence a change in experiences and/or expectations of palliative care.
Interviews are designed to be flexible, and participant centred. They can be held at locations that best suit the participants - whether in their homes, residential aged care, or online.
