05 February 2024
Talking about and planning for death is uncomfortable, especially when it comes to a loved one. But 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.
Now, a new study from the University of South Australia is hoping to gain a better understanding of what is working well in rural palliative care, with the goal of improving knowledge and access to palliative care in rural and remote areas.
Conducted by UniSA’s Department of Rural Health and supported by The Hospital Research Foundation Group, the study is part of a larger research project - the Palliative Care Research Collaboration.
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 is high quality health care and support for people living with a life-limiting illness and their families. Its focus is on maintaining quality of life as an illness progresses, and helping people live well for as long as they can.
“Rural communities are known to be very resilient and resourceful,” Freeman says. “Although rural health care 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.
“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.
“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.
“At the same time, we’re also hoping to reduce the stigma 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.”
The information gathered will inform and provide insights to service providers and policy makers 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. To find out more, please contact marylouise.freeman@mymail.unisa.edu.au
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Media contact: Annabel Mansfield M: +61 479 182 489 E: Annabel.Mansfield@unisa.edu.au
Researcher: Marylouise Freeman E: marylouise.freeman@mymail.unisa.edu.au
