Cleft@18-23 Patient and Public Involvement Group
Cleft@18-23 is a new group of research projects looking at what it is like for young adults leaving regular cleft care.
They are looking for adults born with a cleft aged 22-30 to join their Patient and Public Involvement Group.
This group is a way of making sure that research is designed, planned and carried out with the people on whom the research will impact.
What is involved in taking part?
As part of the Cleft@18-23 PPI Group, you will:
- be offered training on what PPI is and what you’ll be doing as part of the group
- be asked (if you can) to help write the information about the project in a way that young adults will understand
- discuss ways of getting that information to the right people
- discuss the results of the research projects and how they might relate to your own experiences
- think about how to share the results of these research projects and, where possible, to help share them
You can take part in a way that works for you. This could include joining some or all of the online meetings, reviewing documents in your own time, or something else. The researchers are keen for all kinds of people to be able to take part, so if you’re worried about the time commitments involved, please get in touch.
What are the benefits of taking part?
Claudia is a young adult born with a cleft who had this to say about taking part:
“I love being part of an inclusive group where we can make a change to cleft research and help more people understand what life is like with a cleft. It gives my whole journey – my experiences, my fears and worries – all purpose, as I feel I can offer advice from my own life.
“It allows me to feel my journey was bigger than me and that my cleft experience can help others. I love being part of the group and meeting other adults with a cleft who can relate to the stories I have.
“The group is really welcoming, warm and vibrant with tons of different characters who make the conversations so interesting. Joining the group has helped me find more confidence in my cleft and feel less alone in my adult cleft life as well as meeting new professionals and helping future research in the cleft field be more accurate.”
To thank you for your help, you’ll also receive gift vouchers worth £25 per hour of activity.
How can I get involved?
To learn more and get involved, contact either Steph ([email protected]) or Alex ([email protected]).
Please get in touch by the end of August 2024 to express your interest.
Please also let us know about anything the researchers can do to support you in taking part in this group.
