Narrative Storytelling Following Acquired Brain Injury: Creating Connections and Exchanging Wisdom Through Sharing Stories of Lived Experience

Submission note: A thesis submitted in total fulfilment of the requirements for the degree of Doctor of Philosophy by published work to the Department of Occupational Therapy, Social Work and Social Policy, School of Allied Health, Human Services and Sport, College of Science, Health and Engineering, La Trobe University, Victoria, Australia.

Adapting to life following acquired brain injury (ABI) is a complex process of adjustment and community reintegration. While narrative storytelling is recognised as an approach to supporting coherence following trauma or disruption to the life narrative, there is limited direct research into narrative approaches in ABI. The aim of this doctoral inquiry was to explore the subjective experience of narrative storytelling following ABI. The study was conducted in the context of a storytelling advocacy program, in which personal stories are shared to advocate for the rights of young people with disabilities residing in nursing homes. Eight storytellers with moderate-severe ABI and six storytelling facilitators participated in in-depth interviews. Each of the storytellers was interviewed at least twice to maximise engagement of participants with cognitive and communication challenges. A total of 28 interviews were analysed using constructivist grounded theory methods. The findings yielded three published articles and one manuscript under review. Narrative storytelling was found to be a humanising experience. Central to this finding was the advocacy context of the storytelling, in which sharing stories of lived experience held meaningful occupational purpose for the storytellers, and their lived experiences were valued. While the storytellers experienced agency in relationship with the facilitators, storytelling also created space for the storytellers to feel heard, express emotions and reflect upon life experiences. A model of narrative storytelling, generated from the experiences of the participants, illustrates the transformative potential of story sharing, showing the dynamic and multidimensional relationships between the processes of narrative storytelling, identity construction and occupational engagement. This is the first study to investigate the use of narrative storytelling for adults with ABI in an advocacy context, and from the perspective of both storytellers and facilitators. The findings contribute new insights, with practice recommendations considered in the context of holistic ABI rehabilitation.