Story-sharing builds care relationships in Alice Springs

Kidney disease affects many Indigenous families in Central Australia. People are forced to leave their home communities to access life-maintaining dialysis treatment in major towns like Alice Springs.

The social, cultural, emotional and financial impact of this dislocation on people and their families is devastating, while the health system strains at this interface to effectively provide culturally safe care.

A consumer-led project involving people from four indigenous language groups in Alice Springs offered a transformative experience for them and the mainly non- Indigenous workforce involved in their care.

A group of Indigenous people with kidney disease, and dialysis nurses from diverse cultures, worked together to increase cultural understanding and transform care relationships using a participatory action research approach that aligned with traditional ways of learning and knowing.

“Sharing stories about personal experiences of kidney disease, living apart from family and having dialysis was central to the project,” said project facilitator Samantha Togni.

“The nurses told us that hearing these stories really had a big impact and helped them to better understand the experience of people they were caring for.”

Samantha said in turn, feedback received from patient co-researchers was that they felt listened to and developed stronger relationships with the nurses.