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You give me a name that I can’t say, but I have to explain what it is every day: the power of poetry to share stories from young people with a rare disease

Livermore, P; Wedderburn, LR; Gibson, F; (2019) You give me a name that I can’t say, but I have to explain what it is every day: the power of poetry to share stories from young people with a rare disease. Journal of Poetry Therapy 10.1080/08893675.2020.1694210. (In press). Green open access

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Abstract

Qualitative research is about people’s lives; their stories, their thoughts, their feelings, and their experiences. Researchers continue to reflect on the best way to present other people’s stories in a way that stays true to their accounts and delivers the message in a manner which resonates. This article presents one such way, discovered through serendipity, which allowed the researcher to share findings from young people’s stories eloquently and passionately to audiences of healthcare professionals from different disciplines. The silence and raw emotion witnessed after the poetry delivery was akin to that often seen during childbirth when those around are stunned into thoughtful awe. The poetry, which was crafted entirely from young participants’ interview transcripts had two benefits; (1) sharing young people’s stories using their own words and (2) using a presentation format that demanded attention; so that people took notice, listened and reflected on the words and experiences being expressed.

Type: Article
Title: You give me a name that I can’t say, but I have to explain what it is every day: the power of poetry to share stories from young people with a rare disease
Open access status: An open access version is available from UCL Discovery
DOI: 10.1080/08893675.2020.1694210
Publisher version: https://doi.org/10.1080/08893675.2020.1694210
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Juvenile dermatomyositis, phenomenology, poetry, research poems, and stories
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Infection, Immunity and Inflammation Dept
URI: https://discovery.ucl.ac.uk/id/eprint/10087331
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