‘Communicating Lily’s Pain’: a reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment: Communicating Lily’s Pain

BERNIE CARTER, James Munro, Rob Young

Research output: Contribution to journalArticle (journal)peer-review

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Abstract

This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and challenges that her mother faces in assessing and managing Lily’s pain. The animation is built on stories drawn from qualitative research findings, conversations whilst in clinical practice and with members of the general public, parent advisers and other sources. Most of the ‘evidence’ came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio-narratology and is predicated on the basis that stories are important and they can act on and with us.
By using an animation to tell Lily’s story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people’s consciousness about children’s pain and to strengthen relationships and create bonds between clinicians, parents and children in pain to make their dialogue more social, connected and meaningful.
All three of us – the researcher, the writer and the animator - have been marked and ‘re-shaped’ by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story ‘in the wild’, a story (and a resource) we would like you to re-tell and share. The story of Lily’s Pain aims to change the lives of parents and children and professionals. Our hope is that you can be part of that change.
Original languageEnglish
Pages (from-to)3-10
Number of pages8
JournalPaediatric & Neonatal Pain
Volume4
Issue number1
Early online date7 Feb 2022
DOIs
Publication statusPublished - 1 Mar 2022

Keywords

  • pain
  • child
  • Assessment
  • profound cognitive impairment
  • intellectual disabilities
  • Complex health care needs
  • developmental disabilities
  • Animation
  • Narrative
  • reflective

Research Institutes

  • Health Research Institute

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