Table 3 Main motives for participation or non-participation as answered to the starting (open) question

J

“I don’t think research is ever actually bad, and this is not a study where they do real experiments, so it’s always good to learn from it for someone else.”

L

“Actually, in our first pregnancy our daughter was in foetal distress and so we had to have a caesarean section. This might have been an option then, too, as it has something to do with foetal distress, then administering this. And my husband actually asked more questions: does it have drawbacks for the child? No? Then we’ll join, because the study is necessary.

There’s also my medical background. I’ve worked on maternity wards, too. When you work in medicine, you’re open to innovation and new techniques.”

T

“Two things, actually. In my first pregnancy I had pre-eclampsia, so I was very well aware what the consequences might be for me, and then also for the child… Personally, I support the aims of the study, to let you have your baby from 34 weeks onwards, because the risks do not outweigh for mother and child, so to speak. Second, I’ve been coming to a teaching hospital for years, for other treatments as well, and I believe very much in the academic side. I believe in development and trying new things. And, well, research is part of that because if you never do any studies, you can never do anything new.”

U

“Well, originally I was invited to take part in a study about the pessary, a study of twins. I thought: seems good to me, I have a twin sister myself and I used ICSI to conceive, so there were also people who took part in this kind of study for me. That’s how I’m pregnant now.”

Z

“Well, first, it did really apply to me and there was the choice between taking blood or iron. Otherwise it would have been iron, whatever. So I thought, let’s see what happens with this. And I was in the blood group. Looking back, I’m very happy with it. And, as I just said, I often do studies myself. So then you know better how important it is, that you need to recruit people, so erh, actually that’s the only reason.”

M

”The most decisive factor, of course, is that the consequences of oxygen deprivation are pretty severe. If you could reduce that in some way, by taking a particular drug, then I’d choose it. Yes, yes, good. And because the drug was already being used for other things – OK, so it hadn’t yet been fully tested for oxygen deprivation – then it shouldn’t have any bad effects. You assume that it can only be beneficial. And so then I think, like, that’s something I want to take part in.”

P

“OK, well, that was mainly due to the fact that there was a chance that my labour would be induced, otherwise I’d have to wait until 37 weeks come what may… The contribution to research as well, of course, I thought that was a good cause, but it wasn’t the most important. I thought: I’m going for immediate induction. I couldn’t imagine having to stay in hospital for five days, not allowed to do anything, so I thought, like, let it come now.”

Q

“First of all, I don’t see myself lying here for another five weeks. And pretty soon after that the realisation that you’re already open down there, with a risk of infection for yourself and for the baby. And yes, in Enschede the doctors also said it was viable enough, so that was for us a reason to take part.”

V

“That once the baby was out my high blood pressure would be gone. That’s what I thought, that was about it. But on the other hand, I was a bit scared. Will I have him earlier – that was at 36 weeks – so it was a bit of a dilemma deciding what would be best. Then she explained to me: the earlier the baby’s out, the better it should be for mother and child. So that was actually the reason why I said I’d do it.”

W

“That was because I hoped it would be better for the baby, although I still had an uneasy feeling about it. That was because nobody could say what the potential adverse effects were. Yes, I kept on feeling uneasy about it.”

“And I had something like, in my case it can only be positive, because I mean, the test would indicate whether the chance was very high that you would deliver very soon, or that it could take a while. So, I really felt like, I felt that I ran little risk, because if the test would show that you would fall into the test group, than you would get either a placebo or tocolytics.”

N

“And I thought something like, in my case it can only be positive because, I mean, the test would indicate whether the chance was very high that you would deliver very soon, or that it could take a while. So I really felt like I wasn’t running much risk, because if the test showed that you fell into the test group, then you would get either a placebo or tocolytics.”

Y

“Then you know how and what.”

C

“Well, there were several reasons actually. When your colleague started talking about it, when I had an appointment about it, I thought: ‘Oh my God, no, not a pessary! Because I had a friend who was admitted to hospital because a pessary [not in pregnancy] had caused a lot of bleeding. So that’s what I told her [the colleague]: that that had been a life threatening situation. So I had a feeling of, like, if I think now about pregnancy and a pessary, it doesn’t make me very happy.”

D

“For me it was pretty clear, actually. Once I was here I thought, like, just let Mother Nature do her work. I’m pretty religious [Muslim], so perhaps there’s a reason why those children are born early. I believe in God, you know. I think, like, fate decides. If those children want to be born earlier, then so be it. If not, then not. That was my thinking. I was scared, too. What if I take part and something happens to me, a bit of blood loss – or a lot – or something happens to the babies.”

E

“She [baby] was four weeks early and that blood pressure kept on rising. They just couldn’t get it down. I’d already been lying there for a month and I’d had enough. You want something to happen. Then they asked me: do you want to take part in this study? Because there’d come a point when the doctors were saying, we don’t know any more, either. So I thought, well, if they don’t know, who does? I had to make my own choice. … And then I thought, actually I can better prolong it for a while, to see how long it takes. Because if I had decided to take part, you don’t know whether you’ll be induced or not. That’s not certain, either. So then the disappointment can be huge. That was when I decided not to do it, to see how long we could prolong it.”

G

“I had a very tough pregnancy, with a lot of bleeding, and in fact the whole nine months were entirely uncertain… I was given those lung development injections and I tocolytics, after which I couldn’t feel my baby at all… When they asked if I wanted stay on the tocolytics, I linked them a bit with that so I thought, like, no – because I wanted to feel my baby again as soon as possible, to regain a bit of the certainty that everything was alright. So for me, that was the most important reason.”

I

“At first I was really inclined to participate, because a lot of people close to me said, just say it works. Your babies will stay inside longer. But personally, I had the feeling that everything was going very well, that it all, yes… And I do react quite strongly to things, to jewellery or a piercing or something. So I think, if something’s going to be stuck inside my body, it might react really badly. If nothing’s wrong and I do that… I found that a bit scary. And then there’s the fact that you couldn’t choose which group you were in. That’s logical with a study, but that’s why I didn’t do it in the end.”

K

“Well, it’s not without a reason that they tell you that you’re officially allowed to deliver from 37 weeks on, so yes, I thought it was a risk being induced at 34 weeks. Because the doctors don’t just say: from 37 weeks the doctors will induce you automatically and they’re doing a study and I didn’t want to be a guinea pig. If something then goes wrong …”

A

“I would happily have taken part if I could have opted for iron tablets, but that choice wasn’t available. You have to participate blind, and then I don’t know who decides. I don’t know how that works, but someone else decides for you which of the two you are going to do. What’s also complicated: I didn’t want a blood transfusion. I was lying there on a drip and I had a catheter, and then I thought that with iron tablets I could go home and otherwise I would have to stay even longer.”

B

“I’m at the AMC. That’s a teaching hospital and they do all kinds of research there. I would have to come in more often – it was all about a pessary against premature birth – and I would have to come in more often to measure it up and for ultrasound. I did seriously consider it, but those extra visits… If was in pain, for example, or it wasn’t convenient. And I’d just heard I was pregnant with twins sharing an amniotic sac, which is a very rare situation – you have a lot information coming at you.”

O

[Unplanned pregnancy] “Yes, and everything suddenly went so fast. Then I really thought, like, well, I don’t have to be induced tomorrow. That… the chance was 50%, and I didn’t need that. No, I feel it’s all gone too fast. Because you’re… No… After three weeks attending the hospital, I was admitted. I’d never been in hospital before and… Yes, yes, I was homesick. Yes. But, I didn’t think, like, whip him out tomorrow. Really, that just wasn’t what I wanted. That was simply too fast for me. I couldn’t take it all in.”