Update:
July 2022
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‘.
January 2022
All our scheduled workshops are fully booked. If you would like to join our parent discussion group or waitlist please ‘click here‘.
Welcome to the Parent/Carer Page!
You are being invited to a parent discussion group about the day-to-day management of JIA. We are especially interested in your experience of
- symptoms of juvenile idiopathic arthritis (JIA)
- side effects of JIA treatment.
Before you decide if you want to join, please read through the frequently asked questions around taking part and what it will involve for you. If you have any questions or require more information, please do not hesitate to contact the researchers on the team, at daniela.ghio@manchester.ac.uk.
1. Why are we talking?
We want to develop tools and resources to help support the day-to-day management of JIA for children and their families. We want to hear from you about what would be the most useful by finding out what matters to you and what you perceive as a priority. It is a chance to have a say in what will be developed and why.
2. Do I have to take part?
Joining the parent discussion groups or signing up your child to the art workshops is entirely voluntary. If you both decide to participate, you will both be provided with consent forms to sign. You are both able to withdraw at any time from now to up to 3 weeks after the workshops/discussion groups. (The reason that you are not able to withdraw after this time is because this is the point that we would anonymise the data removing all personal details. This would make it difficult to be sure we had removed your individual contributions after this time.)
3. What will happen to me if I take part?
If you decide to take part, you will attend an online discussion group with some of the researchers and other parents of children with JIA. During the discussion groups, we will ask you questions relating to you and your child’s perspective on how they cope with their symptoms from JIA and any side effects of treatment. Examples of discussion topics include:
- How do you and your child manage symptoms related to JIA and side effects related to treatment
- How are things for you in terms of school, communication with teachers and any extracurricular activities your child takes part in?
- What tools do you already use (if any) to help your child cope?
We would like to work with you and hear directly from you to drive improvement and ensure that when we develop tools and recommendations for future research, they are based on what matters to you.
If your child takes part, they will join an online art workshop with an art therapist. The art therapist and researchers will talk to them about their JIA symptoms and any side effects of medicines while they take part in activities using clay and drawings. This will be a low key discussion and they will not need to answer anything they do not want to. You are more than welcome to sit in with your child during the art workshop if you would like to (or if they would like you to). We would ask you to keep confidentiality on everything you hear and for the purposes of our research, we would also ask that we keep it a discussion only amongst the children – there will be the opportunity for you to share anything you wish to in the parent/carer discussion group. If there is something that you would like to discuss afterwards with the researchers you can contact us by email to arrange a follow up at daniela.ghio@manchester.ac.uk
If your child does not wish to take part in the art workshop, you can still attend the parent discussion groups.
4. What are the possible disadvantages and risks of taking part?
The discussion groups may cover sensitive topics for some people. If you are uncomfortable answering a question, you can let us know and we will move on to the next topic.
All reasonable measures are taken by Teapot Trust to ensure that the risks of harm to a child’s welfare are minimised. Where there are concerns about a child or young person’s welfare, 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 the safety of our service users and their families. Generally, a parent/carer will be made aware of any action taken with regard to a child protection issue being raised. However, the safety of children is our first priority. Teapot Trust has policies and procedures in place to promote children’s safety and welfare in our face-to-face and online work, and to protect children in photography. Annual Child Protection training is provided for all staff, art therapists and trustees. Our Safer Recruitment Policy ensures all those working for and on behalf of Teapot Trust are suitably qualified, experienced and Safeguarding checked.
5. What are the possible benefits of taking part?
The aim of this project is to provide recommendations for future research to assist researchers in making informed decisions for their upcoming research projects. This study may not directly help you and your child, but it will contribute in us creating helpful resources to inform families of children with JIA on the best approaches in dealing with JIA symptoms and side effects from treatment. If you cannot make it to the discussion groups but would still like to contribute, you can keep up with news and updates on the website and vote on the research questions when they become available.
6. Will my taking part be confidential?
Yes. Your identity will be kept confidential alongside any information you provide us. Any identifying features around anything you or your child share will be removed to protect your identity and any information you give us will be kept securely according to the data protection rules at the University of Salford.
7. What will happen afterwards?
If you and/or your child would like to take part, please go to the sign up page (please also have a look at the “For Children” page beforehand with your child) and find the workshop and group that would best suit you. After these workshops and discussion groups, we will create statements based on what we have heard from the children and parents/carers. These will be put up on the website so that you can vote on what you perceive as a priority. This will help inform us and guide our research based on what matters to you.
8. Who is the team?
This is a collaboration between CCAA, Teapot Trust and researchers from the University of Salford. We are working together to ensure that resources developed are driven by both children and parents. If you would like to see who the team is you can check out our ‘Meet the Team’ page!
9. Further information and contact details
If you or your child have any questions or require more information, please do not hesitate to contact the researcher at daniela.ghio@manchester.ac.uk.