Stories and journeys: understanding the experience of living with kidney disease and receiving hemodialysis through storytelling

Aim:

This study aimed to investigate how storytelling contributes to personal and community understandings of living with Chronic Kidney Disease (CKD). Background: Stories shape our personal and social worlds. People may experience CKD and haemodialysis as confronting, disempowering, complex and uncertain. This study sought to understand how these challenges are navigated through collecting personal stories.

Methods:

The longitudinal qualitative study used narrative and arts-based research methodologies to find out the impact of CKD on 14 men and women and how they have made sense of their illness. Over 10 months, the researcher undertook a series of observations, 46 interviews and creative activities, initially face to face and later by telephone due to COVID19.

Results:

Preliminary findings from the narrative analysis evoke classic story forms of chronologies and epiphanies, suggestive of the “hero’s” journey or “quest” journey. Using this lens to view the person’s experience reveals themes as they: (I) Cross the threshold at diagnosis into the unknown “other world”, being compelled by internal motivations and cares for loved ones. (ii) Journey through trials, restrictions, and polarities of machine and body, and are changed, physically and metaphorically, in their return. (iii) Portray their health practitioners as guide or villain, and develop a strong connectiveness with others within the dialysis unit.

Conclusions:

The journey for people with CKD may not be “heroic” in the superhero sense but is a testimony of perseverance, obligation, and persistence. Recognising the person as the driver of their unique journey, builds understanding and bespoke care from health practitioners. Stories told and witnessed supports the protagonist to reconstruct their changing sense of self. A study outcome includes sharing stories through an exhibition.