By London YPAG,
Hello, I’m Maisie and I joined YPAG last November, but this is my first blog post. I hope you had a lovely Christmas and happy New Year! This is what happened at the January meeting:
The first researcher to come in and talk to us was part of a group called ‘Ci2i’: ‘Co-designing interventions 2 improve the experience of taking part in eye research’. They try to carry out research at Moorfield’s Eye Hospital to learn about children’s eye diseases and to improve treatments. Lots of children take part in research at Moorfield’s Eye Hospital, but Ci2i wants to improve the way it feels to take part in that research and make it ‘a really happy, fun and positive experience’. Our job at YPAG was to help give feedback on sheets that would be given to children taking part in the research and talk about the overall plan.
The next researchers to join us were the Design Map team who was working to create interactive units for children in waiting areas in the new Zayed Centre for Research into Rare Disease in Children
We were shown a 3D Digital Model of the eye-catching area and told all about the activities it includes, like a tree of life, sliding puzzle about cells and a digital multiuser touch table. Our group was asked to organise a group of cards they had to display an idea for one of the interactives. We debated what could be interesting to fit all age groups and what images we could pair up with the game.
Another researcher came in talked about endocrinology (the study of hormones) and GHD (Growth-Hormone-Deficiency). We learned about the causes of GHD and that treatment includes daily injections, which is expensive for the NHS. The researcher hopes to do a study about GHD and asked for our feedback on his plans.
The last researcher of the day came to talk to us about how mental health is affected by hearing loss in childhood. Points were made that hearing loss may cause children to find it hard to talk to and listen to other people (especially as most people use speech instead of sign language). The researcher is doing a study to find out how hearing loss affects depression, bullying, self-inflicted harm and satisfaction. We shared our opinions and ideas about her plans and gave her some feedback.
Thank you for reading my blog post and I hope you enjoyed it!
International Children’s Advisory Network (iCAN), Barcelona, June 2016 In June 2016, Claire Callens (NIHR CRN West Midlands Patient and Public Involvement Officer) attended the International Children’s Advisory Network (iCAN), 5 day Research and Advocacy Summit in Barcelona. Claire Callens who co-leads and facilitates the NIHR Clinical Research Network West Midlands, Young Persons’ Steering Group was […]
Great Ormond Street Hospital for Children in London is researching 3-dimensional models of congenital heart diseases.
This exercise develops knowledge of different types of research and related terminology. The task requires young people to match a phrase with its definition.
