Table 6 Practical considerations when involving young people in research

6a.Timing of involvement

M- I would probably say week days, because obviously people have like college or school or work or whatever. So like today (Saturday) there was no problem for me to come here (England over 16)

6b.Timing of involvement

F: Probably during holidays and all that, I have quite heavy workload with college and I have exams coming up and stuff so probably holiday kind of times. (Scotland over 16)

6c.Timing of involvement activity

F- I think as soon as you’ve been diagnosed, I think is probably the worst time, because I don’t think you know the disease yourself. So I think if like in the future people are getting diagnosed, I think they should wait a while until they’re familiar with their own disease before they start research. (England under 16)

6d.Convenience - Combining involvement with other things young people are doing

M- The most important thing about why you get involved with research is convenience, so try and maybe do what they did, because if I was to be asked to do this separately once every couple of months, I would probably think that this is going to be hassle. So rather than setting up a separate group, try and maybe go along to some other groups, like that lupus group or other support groups (England over 16)

6e.Incentives for involvement

M- People are going to be more receptive if they think there is a reward at the end. Because you could put out notices saying we need people to come and help and you’ll only get those people who are actively involved or who actively seek out these type of opportunities. But if you set some sort of incentive, you may get people who think it’s not the normal thing they do but they’re willing to help out. (Northern Ireland over 16)

6f.Patient led or researcher led involvement

M: I think that it would be better if someone was there for ad/medical stuff as and when needed, but we were allowed to just get on with the thing. Like you might need someone to give stimulus and ask a couple of questions. But generally I think it should be like it is today, with just us talking, just the patients. (England 16 and over)

6g. Patient led or researcher led involvement

F: So it is interesting the continuity and management of it and stuff, so you set that up so it is a patient led thing and that is different to having a researcher-led thing, as researchers can’t do a lot of obviously, it is time consuming… (England 16 and over)