A new University of South Australia study is aiming to gain a better understanding of what’s working well in rural and remote palliative care, with the goal of improving knowledge and access to palliative care in these areas.
Led by UniSA research student and registered nurse Marylouise Freeman, and UniSA Associate Professor Kate Gunn, the study will explore positive palliative care experiences from the perspective of primary care givers.
Palliative care involves high-quality healthcare and support for people living with a life-limiting illness and their families. Its focus is on maintaining quality of life as illness progresses, and helping people live well for as long as they can. While talking about and planning for death can be uncomfortable, researchers believe sharing positive insights about aspects of palliative care that have worked well can help improve end-of-life experiences, for both the patient and the carer.
“Rural communities are known to be very resilient and resourceful,” Ms Freeman explains.
“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.
“Specifically, we’re looking to explore the experiences of primary carers – people who have been the main carer to someone who has died in a rural area within the past two years.
“Caregivers 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.
“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.”
On top of this, Ms Freeman says researchers are also hoping to reduce the stigma often associated with palliative care.
“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.”
Information gathered will inform and provide insights to service providers and policymakers about the lived experience of rural communities and help improve knowledge and access to rural palliative care.
The research team is currently looking for participants to take part in semi-structured interviews as part of the study.
To be eligible you must be aged 18+, a primary carer of someone who has passed, who received rural palliative care in the past two years, and able to share information about positive aspects of this.
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