Table 3 Quotes of interview participants that illustrate their experiences and perspectives concerning inclusivity, roles and representation

Inclusivity

2A

“And I think, you can’t only ask the adult, or young-adult patients how they have perceived it as a child. That is some sort of proxy, but the best thing is, to hear from the patients, the young patients themselves what they consider important. “ (S1_o)

2B

“Jee, would they take me seriously when I bring in my perspective? That feeling I lost already in the first half hour. I really think that they were listening with much respect for everyone. Regardless of whether you’re a parent or not. That is the benefit of voluntary participation; everyone is there because they chose to be part of this. It is not similar to a project you get assigned to at work, when people say: “ I’m not up for this”; you know? You see here that everyone has a positive attitude, but I also really felt respected.” (S12_o)

2C

“It is odd, but I think parents are different. They have their own view. Something that they consider important.. look, of course they can represent adolescents, but also not. Because they also see things differently sometimes.” (S7_p)

Roles & Representation

2D

“ Because I have noticed that it's better than solely your own opinion. You see, there is you and your own problems. But that is not what most of the people experience. Therefore I always tried to be transparent about what have I heard from others, also inside our organisation. To continuously provide feedback.” (S7_p)

2E

“I indeed participated as a parent, but I did not continuously think of my child this or that. Because there were several things, [..] several things we discussed that were not applicable [to my child], or did, but would only happen at a much later stage. I therefore have the feeling that I participated as a representative, even if you also should not think too much of it. But, well, you try to help everyone. (S12_o)

2F

“[..] patients and clinicians can see that very differently. And then in a discussion, that's complicated. Then you have to reflect and think to yourself, well, as a clinician you also shouldn't push your own perspective too much, you know?” (S6_c)