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Table 2 Descriptive Summaries and Illustrative Quotes (context factors)

From: ‘A group of totally awesome people who do stuff’ - a qualitative descriptive study of a children and young people’s patient and public involvement endeavour

Descriptive Summary llustrative Quote Ppt.
CONTEXT (1) CCRF ‘role’ perspective (1a) “I think my focus of my CCRF work is slightly different because obviously it’s the end, more of the end result of the facility being hired out and patient experience there” S02
(1b) “[the Children’s Board] just felt like another thing I was doing because I did [a study]” C02
(2) Purpose, remit and future direction (2a) “I think that is what we have done, when you are here, we have to look after you, you tell us what you want, and that’s what we have used it for” S03
(2b) “I think it was about getting a child’s perspective of being involved in research and what they understood by it, and what was good and bad about it and what could be improved” P02
(2c) “At the moment they don’t have a purpose now because they’ve done the information booklets for the CCRF, we’ve got the information that we asked from them from the ‘Big Event’ … but actually there is nothing else for them to do, at the moment” S01
(3) Aspirations (3a) “I personally think we should be involving them to improve their experience of our physical facilities, educating them about research in general and participation and the whole ethics and everything that goes with it, encouraging their participation in research and potentially leading to them wanting careers in research” S04
(3b) “Yes because it is showing us what we would read, not like what older people would want to read, but what we would want … because like sometimes it is too much information” C02
(4) Learning as reciprocation (4a) “I think an educational element, rather than us just taking, that we give something back as well” S03
(4b) “Maybe a bit of that [education] but I felt the day was more about learning from the children rather than teaching the children” P02
(4c) “[more education?] No, I think that it was fine the way it was” C02
(5) Regular meetings, contact & feedback (5a) “It would be nice for the children to see that their comments made a difference, show them the revamped patient information leaflet” S02
(5b) “You would come back in and be like, right what did we do last time” C02
(6) Expectation setting & ground rules (6a) “I don’t think you should necessarily set too much as expectations, but maybe set what, it’s a good question, what we would like to see, what we want from you as opposed to what you have to give us … maybe what we are trying to achieve rather than you need to turn up to” S03
(6b) “You don’t want to make it like a rulebook like you can’t do this, you can’t do that, you can’t do this, you can’t do that, it’s too much like school no, then they won’t want to do it” C02
(7) Culture of PPI (7a) “I think the current purpose is, it looks good, if I’m being totally honest, it does look good that we are doing our bit for PPI” S01
(7b) “I thought it was really good that they wanted to know what children thought and didn’t just use an adult assumed version of what children want” P02
(8) Surprise, underestimation & self-selection (8a) “I was surprised, really, really surprised at the level of knowledge the children had, I had underestimated what they were capable of doing” S02
(8b) “I know these people are self-selecting, they’ve got to be self-selecting, you don’t just come across a hospital find a poster and go oh, that’s a really good thing, they are probably interested in research anyway” S03
(8c) “Because I like to help out” C01
(9) Reciprocity, incentivisation & participation (9a) “I don’t equally think they should be paid really, I think a thank you but a small thank you” S01
(9b) “We also get the clipboard and all those things” C02
(9c) “Yes, I think I would but I think it just makes it a little bit nicer” C02
(9d) “I think now the sort of onus on children to do extra-curricular activities for their CVs is quite important … we gave them a certificate so it will be good for their CV and it would be good if they do on going work that they can talk about when they go to interviews and things” S02
  1. Abbreviation: ppt = participant