Table 4.
Parental quotes
| Theme | No | Quote | Parent no. |
|---|---|---|---|
| Empowerment | E1 | Yeah, if it's about the nature of the conversation, I think, erm, that if I'm in control, that I then, sort of, decide where the conversation goes. That I very much control the conversation, like, this is what we are going to discuss. | 6 |
| E2 | I'm all for the idea of teamwork. If as a parent you are very much in control, you might miss things, as the rehabilitation physician sees these things every day. That goes for me too, but from a totally different perspective, with only the one child. | 1 | |
| Information | I1 | And then it's good if it all comes together in one place. As it's really a jungle, like how does this all work. With all these aids and play therapy and other therapies what not. | 4 |
| I2 | It's nice the way it's put on paper, but things often do not work that way in practice. And that's what I've come across most in recent years. | 7 | |
| I3 | Like having a sort of safety net available; if I come across something I can have a look. | 12 | |
| Asking questions | A1 | So, in that sense I think it's really convenient to have a list of questions. It's very pleasant, to sort of have both sides remained concentrated. I always recommend people who ask me questions, like, well you know so much about it now, just make a list. Cos people are nervous at that moment and they forget question number two. And then I'll go back and say doctor I still have one or two questions. Can I ask them? | 11 |
| A2 | What I found amusing is that you could make a shopping list. That you actually write down questions. I always get, that I'm with the doctor, and then I think what was it again. And then I just happen to have forgotten my note. | 6 | |
| A3 | Well, it does help you to check “Have I covered all topics?” that you want to discuss. As it does inspire you about the topics you could discuss with the rehabilitation physician. | 4 | |
| A4 | I'm sometimes a bit unsure whether I'm not asking too many questions. But that does not stop me from asking those questions anyway. So, it does sort of tell me, like, OK, I'm not the only one, and there are so many parents like me and it's good that I ask them. | 6 | |
| A5 | It could be that questions are already answered in the WWW‐roadmap, so that I have fewer questions. Or it could indeed function as a source of inspiration to think of some more questions than you had. | 13 | |
| Roles in the consultation | R1 | We discussed that with the physiotherapist and we'll be seeing the paediatrician on Monday. And she said “talk about it there too” and then I think … in my view she just deals with organs. | 4 |
| R2 | In a way it's because of the WWW‐roadmap that I thought, like, I can just ask my questions. The doctor is just another person, and he is not necessarily placed above me. And that's something that became very clear in the WWW‐roadmap. Like, the doctor's place is beside you, not above you. | 6 | |
| R3 | I think that if you go there unprepared, so not the kind of conversation we are having now, that you'll get stuck. And then you know, if you are not prepared, you'll have no questions. So that means that the doctor will automatically more or less take control. So, I think that if you have the WWW‐roadmap at hand at that moment, and so you have some questions of your own, you then also do certain things. | 13 | |
| Having a comprehensive picture | C1 | I now perhaps felt a bit more secure about my shopping list as I had checked all these areas once again. | 9 |
| C2 | I want to be involved in the choices that are made. To be taken seriously, for my own experiences. I do get the feeling that that's happening, by the way. But I do not have to be the doctor, or the medical expert | 9 | |
| Efficacy of the WWW‐roadmap | W1 | Answering the question whether “being in control” has changed after using the WWW‐roadmap: Well, not this time, but that's to some extent because I've gradually taken more control over the past 17 years and I know where to find everything. | 5 |
| W2 | I'm sure that if I'd had it at the start of the whole process, the WWW‐roadmap would have given me a lot of control, cos if I, like, look back on the past, and what I had to do to find everything out. […] And then if you look at this WWW‐roadmap, it's all much more available. Yeah, the things you want to find out you'll find in the end. That would have given me more control at the start, and also, like, have made me feel more at ease. | 5 |