Around 2.65 million Australians are carers, many of whom support loved ones through palliative care.
Former nurse and social worker Michelle Hood (pictured) is researching what it’s like for rural caregivers during and after end-of-life processes as part of her PhD with La Trobe Rural Health School.
While there is significant literature on patients’ and practitioners’ experiences, Michelle said there is not much data on carers’ lived experiences and interactions with the health system during palliative care.
“There’s a lot we can gain from better understanding the person by the bedside. They know the patient best and can contribute to making things better.”
Michelle’s research was motivated by her own experiences as a carer when her mother, then brother, passed away.
“What struck me was how different these experiences were, particularly in terms of how I interacted with the health system and how it interacted with me.”
“It made me curious to hear from other carers and see what common themes emerge.”
Michelle’s research takes a dual approach, combining critical auto-ethnography of her own experience with qualitative data from up to 30 extended interviews.
“It’s a very sensitive topic, which is perhaps why it’s not really talked about and there’s not much out there.”
“So far, I’ve found participants to be incredibly open and trusting. It’s been an absolute privilege hearing their stories.”
By understanding what worked and what didn’t for carers, Michelle hopes to make recommendations to support better collaboration and understanding among all parties, as well as interventions to support carers pre and post loss.
If you’ve been a carer during end-of-life stages, are over 18 and live in regional Victoria, and would like to contribute your story to this research, please contact Michelle on 53276667 or m.hood@latrobe.edu.au
