Clinical trials: Parents’ experiences

 Well I think what would probably make life a little bit easier is for people to stop being apologetic for what they’re trying to do, because they almost come across as like you know “Really sorry to ask you this” you know and they’re almost afraid to ask, you can see when they’re coming in to do it that they’re afraid to ask the question because they think “Oh, they’re in a traumatic time” you know. And the feedback from the nurse that was running the Chip Trial at [hospital] is “You know I wish more doctors would get would ask parents to take part, I wish more doctors would actually get on board with it” and I think they’re almost afraid to do that because either a) it gets in the way of what they’re trying to do or they think it will or they’re afraid they’re afraid of what the parent might say. You know just get on with it almost.

 I think one of the things they talked about a lot was that these things quite often happen at an absolutely crunch, critical time. You know, you have a child, a baby in a neonatal unit. I mean your life quite often is in terms of crisis. How then you begin to make a decision, if you do make a decision, and how best it is to approach parents, and what information you give them and what information you don’t give them. And how much somebody needs to know is probably different to the person in the next cot. And I think also for us a big thing was how much you trusted the doctors. Which sounds an awful thing to say but, you know. And personality plays a part, you know. Is it somebody you like? And you are trusting them with your child’s life you know and you don’t have a choice about it. It’s a choice that’s forced upon you. And I think that has a big part to play. And I think I hinted at that at the beginning on the atmosphere that’s created. Certainly I felt more than happy with the level of care we had, which I think was what has endeared us to kind of be part of things. And, and I’m sure had that not been there then I wouldn’t. But I think trust is a huge thing, you know, a really huge thing, and how doctors build up trust with parents. Which they need to do anyway, but actually if you want a parent to sign a form you’ve got to work twice as hard at it as well.

 Yes, I mean if it has to be done there and then, I’m wondering if they should contact you not there and then, do you know what I mean? if they should agree to make contact with you. They probably wouldn’t get as many people signing up. Because you sign up there and then, don’t you? And they need people to take part. And it doesn’t bother me. I mean if it had been a drug, you know, of course I would have asked hundreds more questions and it would have been a completely different decision for me to make. But it wasn’t. So it was a paperwork decision, so it was not a difficult decision to make.

 I think just really for him, not really for me because I did understand things, I think sometimes some of the things how they bring it across might help other people by their terminology, they use for things because some parents might not understand certain things.

 Yes. I mean my feeling probably is, and I don’t know how right I am, is if you looked at social classes of people who take part in it, I am sure people who are confident and articulate and probably, I’m guessing, fairly well educated are more likely to take part in something. I don’t know what the social spectrum is. I, my guess is if that is the case then there should, somebody, people somewhere should be working really hard at trying to get that group that maybe are less reluctant to for a whole variety of reasons. And that’s where thought and money should be put into.

 Yes, I think if the trial, which is where it perhaps needs to be explained more, if the trial is related to not just whether you get this pack as opposed to not a pack, but whether, what you get in the pack, then, yes, it would perhaps be helpful to have some questions. But I’m not sure if the questions were for Saskia she would care. She doesn’t read up about, she knows about her illness, she manages it herself, but she doesn’t read about it because she doesn’t want to think about it all the time. Children don’t really want to read stuff.

 Well, I guess the only thing would be maybe to explain a bit more how the questionnaires related to what they were trying to get out of the trial really. Because as I, as I said earlier, it, sometimes I thought, “Well, I really don’t know why they’re asking this” related to the topic of the, the trial. But, so I think that would have been perhaps useful. And also the follow-up. So, you know, informing us of the outcome. Obviously we’ve only just finished, so there’s time for that to happen. But there was no mention that that would happen in the near future. And I should have asked. But I think that would certainly be useful for any trial.

 I couldn’t really see why it couldn’t be done at your local surgery as such; there were certain parts of it which could have been done locally to save you. Because it’s not that much of a journey, it’s 15 miles, but it’s still that time of year, winter time when you have to you know, pack up, and it would have been easier to have been done at your local surgery. But that’s just me being picky really.

 Yes, I think so, yes. And also I think it makes you feel less of an oddity in an area of medicine which is already very specialised. So you’re in the minority anyway, and then you become more in the minority to be eligible for this trial. So, you know, you feel like you’re, you’re dealing in small numbers. Now that might not be the case, but I think it’s quite nice when you feel connected to a wider community or actually, you know, I don’t know, “There are a hundred people in the UK doing this trial.” You know, that, that’s nice. 

 I don’t know if it’s already done in certain studies, but I suppose if it was a, a potentially harder study or, or maybe in the early days of this study even, I might have benefited from being able to chat with other people who were taking part, maybe on an Internet-based, you know, a web-based thing. So I could have, you know, said, “We, our baby isn’t really enjoying not having any clothes on while we oil her to begin with. Is anybody else experiencing this? Have you got through it? Is it, is it getting better?” And just, potentially just help each other out a bit on the, on the tough times. I suspect in other studies that that might already happen. And it might be very very helpful if it’s a, potentially a less, less pleasant thing that, you know, something with more side effects or something where you’re constantly worrying about whether you’re doing the right thing. Then, then a little bit of support from, from other people in the trial might be useful. Maybe that, maybe part of that is because, because it has to be, maybe it makes it more scientific if you’re not talking to other people. But, but potentially it, depending on the circumstances of the trial, there might be a little bit of that. Because I could always have, have rung the, the, the people involved in the trial and said, “Oh, I’m having this trouble.” And I’m absolutely sure they would have given me lots of moral support. But it was just a thought.

 And what they were interested in was really as a parent, how it, what it feels like, and actually what they can do as staff to ease any anxieties which, which comes about. Now the trial was actually stopped as it happened, so it was actually quite a short period of time that kind of, yes, reading all these emails and things. And I think kind of one of the things that was flagged up then is the confusion of names for parents. You know, it’s meaningless. It’s not meaningless if you’re a medic but, you know, if you’re not it just adds to confusion. One of the big things you talked about was mortality and how you convey, you know, at the end of the day a parent wants to know whether their baby is going to live or die, and, you know, and how you convey and how you use those terms. So, yes, and it was to do with insulin and neonates with a low birth weight in, in different hospitals all around. So, but the doctors, as far as I know, that were heading the trial were all based in [area].

 It's, and some centres are very good in all fairness, and they’ve certainly got better since this trial has been published. They will turn round and say, “Well there is this diet you can have. Unfortunately there’s a long waiting list, or there’s this or that,” but some centres are a hell of a lot better at actually acknowledging there is this treatment now.