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Table 4 Beliefs about and experiences of young people being involved in research

From: What do young people with rheumatic conditions in the UK think about research involvement? A qualitative study


Example quotes

4a. Motivations for involvement – young people’s views and experience are different than adults

F- I would do it because adults and people our age they think differently and they don’t always consider the things that we consider and because we’re the ones getting involved I think it’s good that we have a say. (England under 16)

4b. Motivations for involvement - altruism

M- If someone came to me I’d instantly say, yeah, I’ll take part in it. I don’t care if it’s a bit boring because it’s for the benefit of others. So there needs to be like a Facebook page or something, you know like an online poll and stuff like that (England over 16)

4c.Experience as a young person – Providing a different perspective to researchers

M- I disagree because they should give ideas on how the research is done, because it’s your opinion and if you’re going through something you should have a say on what the researchers are actually focusing on, because it’s happening to you. It would be useless if they were focusing on something that isn’t important to you. (England under 16)

4d. Experience of condition- Importance and value of young people’s experiences of their condition

F: Researchers think they are the best but sometimes they are not, young people have the problems in their body and they know more things about their condition than researchers do. (Northern Ireland under 16)

4e. Experience of condition - Importance and value of young people’s experiences of their condition

M: I think also it is quite important that we have experience. We have experience in the service, we have experience with the doctors and we have kind of had all or quite a substantial part of our life in the service so we know what it is like and we have had good experiences and bad experiences. (England 16 and over)

4f. Experience of condition - Importance and value of young people’s experiences of their condition to research

M: it is like a better thing as well, as you have the doctors who know about the thing, they know about condition and how to treat it but they don’t know what it is like to cope with something like that. (Scotland 16 and over)

4g. Experiences of involvement - Involved but unclear what in

F – He’s called M, he’s 17 and he’s been involved

M – I think I have

F – You’ve come on advisory groups for disease specific JIA and I’m sure there’s questionnaires and stuff. You’ve done involvement and the research side (England over 16)

4h. Experiences of involvement – involved but in a limited way

Facilitator - the other question was whether you’ve ever given your thoughts on how research is done

M- Yeah, once or twice, but that’s only speaking to a researcher at the hospital, that just comes and talks to me (England under 16)

4i. Experiences of involvement – uncertain about whether played a useful role in advisory groups –

Two or three of you have said that you have taken part in advisory groups- have you had the chance to really have a say?

F- I had a big rant one time, I don’t know, it was like one of those next door. I went so off topic and just ranted about the NHS really.

F- it’s addressing things like mental health aspects, which might be more personal than information from blood samples (England over 16)

4j. Experiences of involvement – uncertainty on how or whether to input

M- I never talk during the advisory group thing … I just had nothing to say basically, They were saying things that I was thinking of saying but didn’t end up saying because they got there first. (England over 16)

4k. Experiences of involvement - challenges to participating in advisory groups

F- The last one I think was one of the better ones, because as I said there was less people there, but also because it was kind of like, sometimes in the bigger groups you can hear someone say something that you disagree with, but it’s a bit awkward because you don’t know them well enough to disagree with them, because you just don’t want to get into an argument. But that one, because we were basically all the same age and had the exact same thing, it was better. (England over 16)

  1. F Female M Male (country, age group)