Table 3 Experience of Research Participation

3a. Experience of research in childhood - Degree of understanding regarding the purpose of research when a child

F: I am 18 and I think I did one about a year and a half ago, and there was someone in the Children’s Hospital that kept asking for my saliva yeah. It did become a running joke between me and my dad that she just wants my germs! So yeah, I think I have (England over 16)

3b. Experience of research in childhood - Challenges of recalling research participation in childhood

F: Yes I have when I was younger, I can’t quite remember all the details, I think it was research in how metal joints affect the blood and that and when they test blood, they try and see whether or not they can judge how far…how worn out the joint is (Wales 16 and over)

3c. Experience of research in childhood - Parents taking control of research consent process when younger

F - The X study was okay because I was young enough that my mum came and kind of took control. (Northern Ireland 16 and over)

3d. Lack of feedback on research participation

F - The University one was slightly different. It was quite daunting, I had a one-to-one interview. Mine lasted just over three hours. But I could see the benefits of why I actually should do it, but I still haven’t actually received anything back from it. Sometimes you need to see what’s come off your participation. (Northern Ireland 16 and over)

3e. Lack of feedback on research participation

F: it is like taking a test and never getting your grade (Northern Ireland under 16)

3f. Lack of feedback on research participation

F – But I think it would be useful if people who have it know like what’s been found so they kind of like have got an idea of where it is all going (England under 16)

3g. Importance of feeling that your contribution to research is meaningful

M- I think it’s a trade-off between convenience and impact, if it’s going to really be helpful or if it’s really going to have a big impact. I feel that if I am just going to be a data point then it really doesn’t impress me that it is important. It was conveyed to me that it was a really important factor in their research, I think I’d put a lot more effort into it (England over 16)

3h. Reasons for research participation - Altruism

Facilitator – Why did you decide to take part?

M- Well I’ve got it may as well help other people who have it. (England over 16)

3i. Reasons for research participation – Altruism

F- I kind of decided, because it took me probably three or four years to get diagnosed, I was thinking whether if it was easier for someone else to just be diagnosed straight away, So that’s kind of why I helped a bit. (England under 16)

3j. Reasons for research participation – Altruism

M- Not being rude but I think you are stupid if you don’t take part in research. If you’re upset about something and you want to get better, surely you would take part in something that might make you better in the long run and help others (England under 16)

3k. Reasons for research participation – Altruism – wanting to make things better

F: Exactly the reason I agreed to take part in this is so that young people won’t be in the same situation I was when I was diagnosed. (Wales over 16)