Title: Translating Alice: Exploring the lived experience of persistent pain in adolescents through a fictional narrative
The primary aim of this research is to create a Young Adult novel that authentically represents the experience of an adolescent living with persistent pain. The narrative themes explored include impacts on youth identity formation due to reduced social interaction, arising familial tensions, challenges associated with language utilised in the health system, and peer assumptions, such as they are ‘faking it’. The creative artefact is founded in current scholarly understandings of persistent pain, media discourse analysis, thematic analysis of interviews conducted with adolescents, and the emergence of the ‘Sick-Lit’ genre as the work’s critical context. These investigations are framed by the issue of ‘translation’, referring to how the experience of persistent pain can be ‘lost in translation’ through the various discourses and tensions encountered by adolescents living with persistent pain: from medical practitioners to the families of adolescents, from private lives to the general public, and from documented articulations to their fictional representation. This research seeks to broaden awareness of persistent pain for adolescents, families and the wider reading public.
Jules Mead is currently undertaking her Master of Arts, by research, with the USC School of Creative Industries. She graduated with distinction from a Bachelor of Nursing in 1994, and holds a Master in Nursing (Nurse Practitioner) from QUT. She currently works as a Nurse Practitioner at the Queensland Children’s Hospital, in the area of paediatric pain management. Over the past fifteen years she has led projects that have resulted in the establishment of the acute pain service in 2005, at the Royal Children’s Hospital, and the persistent pain service in 2015, at the Queensland Children’s Hospital. She works collaboratively with Griffith University, and has been the Chief Investigator for a number of research studies, which have attracted grant funding. Jules is passionate about advocating for young people with persistent pain and increasing awareness of the experience of persistent pain in children and adolescents.
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