Table 5 Challenges and facilitators to young people’s involvement

5a. Flexible approaches to involvement – role of social media and online approaches

F-. So I mean you’ve Facebook, you’ve twitter, which I’m pretty sure at least everyone in this room has at least one. Even the younger group. There would be some way of getting in contact with them in that manner. And it’s a free way of getting in contact with them; it can be monitored as well. And its instant results. And it means that you are not going to have the idea that you can’t go along as you can’t meet this person’s schedule, not a problem, use that. (Northern Ireland over 16)

5b. Flexible approaches to involvement – role of social media and online approaches

F: Maybe consulting more groups like us, we can maybe video conference if you wanted to give it a group discussion about something and the same for all different regions. (Wales over 16)

5c. Continued importance of face to face involvement

M- Yeah I like face to face, because it’s good to learn about other people, (England under 16)

5d. Clear roles and importance of co-production of research

M- I think both people should contribute and agree with what’s going on... it shouldn’t be just the doctors decision, it should be the patients’ as well. (England over 16)

5e. Access to research and researchers

M: I think there is I don’t know what the word is a barrier maybe between, you know, young people and researchers. And how you contact each other and even if we did sort of have to, how would we kind of work together? And put that into research. (Scotland over 16)

5f. Being taken seriously by researchers and feeling listened to

F- I think they have to take people who are actually suffering with it seriously, and how they are feeling it like, and they have to have some consideration for what they are doing. And to think whether it will actually benefit them in some way what they are actually researching into. (England over 16)