A big thank you to those children who took part in the art workshops and the parents who joined the discussions about research priority areas. We have gathered what you have told us and come up with specific research questions and now we would like to know which you think is the most important to start with. Anyone can vote if you are a child or young person with juvenile idiopathic arthritis, a parent/caregiver, or even a healthcare provider. Click on the voting page for more information or go straight to vote by ‘clicking here‘.
All our scheduled workshops are fully booked. If you would like to join our parent discussion group or waitlist please ‘click here‘.
We have a list of questions that children have asked us before but if you or your parent/carer have any other questions please do get in touch with Dani our friendly researcher on firstname.lastname@example.org.
After you finish reading this, we would like you to say ‘yes’ or ‘no’ to this question:
Do you want to join an art workshop and help us to create useful resources for children with juvenile idiopathic arthritis?
Why is this research project happening?
Research happens when we try to find out more information about something that we don’t know enough about. Research is important because if we find something that helps or works it can be used in everyday life.
Right now, we are trying to develop tools to support managing symptoms and treatment of JIA. From what you tell us in the art workshops, we can make a list of the most important topics for scientists and doctors to research to help you and other children with JIA. You will have a chance to check in to see what we put together and vote on which you think is the most important one to start with! This will make sure that when we do develop tools, they are based on what matters to you.
Do I have to say ‘yes’?
Being part of the art workshop is completely up to you and you can always say no if you do not feel comfortable. If you say yes and later change your mind, that is OK too and you can let us know anytime if you do not wish to take part. If you decide to say ‘yes’ to joining the art workshop, we will ask you to sign a consent form. We will also ask your parent/carer to sign one too! If you would like to see who we are before you make up your mind, you can check out our ‘Meet the Team’ page!
What will I have to do if I say ‘yes’?
If you say ‘yes’ to being part of the art workshop, you will have an online art session with an art therapist. During the online session, you will be doing some activities with clay, and drawing while you chat as a group. If you want to, you might share about your experiences of dealing with JIA and medication. We understand that sometimes talking about these topics can be quite sad or difficult. Remember that if there is a question you do not wish to answer you don’t have to. Also, if there is something that you would like to talk to Jane, (our art therapist) about, then you can, she is there to support you if you need it.
We want to make sure that you stay safe in these groups so all reasonable measures are taken by the team and Teapot Trust to ensure that the risks of harm are minimised. Where there are concerns about your safety, appropriate action will be taken in partnership with the NHS or other agencies, as appropriate. Teapot Trust takes a multi-agency approach to child protection and works closely with all our partner organisations to ensure your safety. Generally, we would contact and involve a parent/carer if any action has been taken. However, your safety is our first priority.
Why might it be good for me to say ‘yes’?
If you decide to join the art workshop, we will work together on this research journey to make sure that research will be shaped by you to help you and other young people with JIA. You could make a real difference to other children and young people living with JIA! (Plus you get to meet some other children with JIA and do some fun art too! You could also be nominated for a CCAA award badge for taking part!).
Who will know if I take part in the art workshop?
Only your family, the team and the workshop will know that you took part. We will not tell anyone else and we would ask that you do not share the identity of other young people who will be joining you in the group, so we all be respectful of others’ confidentiality.
We promise to anonymise what we have been told, this means when we talk about the workshops we won’t use your names or anything that would suggest it is you and we can even give you a made-up name which you can choose if you want, just let the researchers know!
If I say ‘yes’, what happens now?
If you want to sign up go on to the ‘Sign up Page’, complete the consent form alongside your parent or carer and to give details on which workshop you want to sign up for, your address to where we should send you the art supplies and where we should contact you and/or your parent/carer.
Any information you give us will be kept securely according to the data protection rules at the University of Salford. If you want to know more about the team go check out our ‘Meet the team’ to get to know who’s who!
Thank you for taking the time to read this. Please let us know if there is anything you want to ask us or if there is something you are not sure about.