The goal is to drive service enhancements to support end-of-life patients and families through difficult transitions.
Conducted by the University of South Australia’s Department of Rural Health, the project has caregivers recount palliative care aspects that worked well for recently deceased loved ones. Researchers will explore positive palliative care experiences from the perspective of primary care givers.
Lead researcher Marylouise Freeman said rural communities uniquely draw on deep resilience amidst care limitations. This project intentionally spotlights those success stories towards constructive policy and practice change.
“Although rural healthcare is often painted in negative light, we’re hoping to do the opposite and tap into the strengths, so we can find ways to amplify what is working well,” Freeman said.
“In this study, we’re specifically focused on the positive aspects of palliative care, and for carers to share the things that they remember working well for them and their loved one, so they can be replicated in other rural settings.”
The project also intends to reduce stigma associated with palliative treatment often avoided in rural areas. Freeman, herself a nurse, hopes to have carers help spread understanding around its role in alleviating suffering at life’s end.
“If we can provide opportunities for people in rural communities to share their experiences about palliative care, we can build on the positives to ensure rural communities have access to the right supports at the right time,” Freeman said.
Caregivers of terminal patients who passed away within two years are invited to participate in interviews if they fulfil eligibility criteria.
“Care givers rarely have the chance to talk about their experiences of palliative care. Other than grief counselling, there’s usually very little opportunity to participate in something positive after the passing of a loved one.”
Researchers will compile key themes and insights for policy makers as well as local care providers seeking to strengthen existing palliative programming.
With participant input, Freeman believes the project can help spread meaningful improvements in palliative access and understanding across Australian rural health communities facing end-of-life challenges.