Co-creating the Lily's Pain project: animation in action
A Talk by Professor Bernie Carter (Professor of Children's Nursing, Edge Hill University)
About this Talk
Children with profound cognitive impairment are a heterogenous group who often experience frequent and persistent pain from a wide range of different sources including both commonplace pains of childhood as well as those associated with their underlying disorder, impairments and prescribed treatments and interventions. Their ability to communicate pain and our (often lack of) ability to understand their pain cues can result in a perfect storm whereby they experience frequent, persistent, significant pain and are at high risk of their pain being underassessed and undertreated. In this presentation I will talk 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 the challenges that her mother faces in assessing and managing Lily's pain. The decision to use an 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. The Lily’s Pain animation is still a story in progress, a story ‘in the wild’, a story (and a resource) I would love you to re-tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. My hope is that you can be part of that change.
Hosts
Simple Stuff Works, Simple Stuff Works
Biologist, recovering teacher and mum of four one of whom lives with complex disability. 25 years experience of exploring supported lying, changes in body shape, measurement of body symmetry and co-productive working with children and families.
