They say 'a picture's worth a thousand words'...
On a sunny Saturday in January 2016 at Evelina London Children’s Hospital, the old saying proved true. Armed with paint, brushes and two big boards a group of young people and their families shared their stories of taking part in research and turned their stories into works of art.
Some of the themes illustrated in the artworks included: expertise, imagination, faith, altruism, world-changing, dedication and hope for the future.
The children and young families spoke of how their participation in research had grown their knowledge of healthcare and research. They felt better informed and were confident that there experience and knowledge could be helpful to the researchers and future patients. When asked to picture what their expertise looked like the attendees selected a star. Drawn with its brain exposed the Star happily shares its knowledge and experience, the real expert in how their condition and treatment is affecting them.
The group discussed the practical requirements of research. They understood why so much information had to be provided to them and how much had to be collected from them. Though they expressed a wish for the research teams to be imaginative and think of ways to cut back on the paperwork.
They understood that research aimed to find treatments fit for children and young adults but they wanted researchers to understand that they were not merely ‘cut-down’ adults. They explained how their needs were different and research approaches needed to be adjusted to provide a better fit for them.
Shaped by a pair of Listening Scissors, this image suggests developing solutions that respond to the needs and preferences of the individual, producing tailor-made recording tools that listen to and adjust according to previously provided content. To this end, the young people chose to depict the altered paperwork in their artwork as a Star, echoing the Star motif described earlier in this report.
Faith and altruism
This joyous ‘Leap of Faith’ sprang from a conversation about the implications of involving children and young people in medical research. The group were well aware that their altruistic involvement in clinical trials brought with it the potential for associated risks, however they collectively agreed that these dangers were much less significant than those caused by children not being able to receive the best possible medication. The group worked into the image a trampoline to represent the support provided by the research teams. They wanted the trampoline to look as if it had just been used to launch another young person’s life forward towards improved health. They hoped that as one young person leapt off the trampoline another volunteer would jump on so that research and its benefits could continue long into the future.
Hope for the future
The artworks and a report created from the session will be used to explain to other children and young people what research is and what it is like to take part in research. The young peoples’ own words and their artworks will be used to create new support and communication tools for research participants. The artworks will feature in exhibitions and events aimed at widening participation in research.
The Research Staff at Evelina London and the NIHR Biomedical Research Centre at Guy’s and St Thomas’ and King’s College London would like to thank all the children, young people, siblings and parents who generously donated their time to take part in the BIGGER Picture consultation. Your creative ideas, feedback and amazing artwork will help us to explain research to other young people and their families. Your input will shape future research at Evelina London and the BRC.
Thank you to the Evelina London and the BRC who planned, designed and ran the project. Your energy and enthusiasm makes us all proud to work in research. Thank you to: Felicity Ballin, Katherine Blackstone, Elizabeth Coombs, Louise Dyer, Claire O’Neill, Ania Rainbird and Ben Sawtell.
Finally, thank you to deadcatdreaming whose inventive and engaging approach to consultation has inspired our young people, their families and our staff!