Wednesday 23rd November 2022, 13:20–13:35 (Australia/Melbourne), Zoom Breakout Room 1
The experience of living with chronic kidney disease (CKD) can be confronting, challenging and complex. Undergoing centred-based haemodialysis for 4 to 5 hours, 3 times a week has a significant impact on people’s lives. This presentation reports on an arts and health research process that sought to understand this experience through the participant’s personal stories.
The research collected stories from 14 people with CKD, in a longitudinal qualitative study that used narrative, ethnodrama and arts-based research methods. Data was collected through observations, 47 interviews and / or creative activities, initially face-to-face and later by telephone due to COVID19 restrictions. The stories were analysed using a narrative analysis and an ethnodramatic process of creating a performance. This disseminated the findings and was also condensed into an 8 minute film.
The performed work, stILL-Life, involved readings by actors, as well as music, film and imagery that responded to the collective narrative of the participants. Sharing stories in this way, deepened understandings of the lived experience, and amplified the familiar universal stories as well as those specific to the dialysis experience. Storytelling can help us make sense of our experiences, particularly when significant change and loss disrupts our life path.
This research recognises the person with CKD as the driver of their unique journey. It demonstrated the valuable role that the arts can play in understanding the lived experience, and highlights how the arts can enrich and deepen research practice.
Leigh Tesch is a current PhD candidate with University of Tasmania, School of Creative Arts and Media. Her research investigates storytelling with people with chronic kidney disease who are receiving haemodialysis. She has a background in occupational therapy, community and performing arts, and co-ordinating and delivering arts-and-health projects.