Clinical trials: Parents’ experiences

 Yes it’s making informed decisions really on that so. It very much depends on what kind of outlook and philosophy about life that the parents have. You know in their attitude in their family life, you know, really, it’s as I say we’ve always striven to do the best we can with the circumstances that we have and to that extent if you, if you can get better ways of treating and also better ways of understanding really, you know, about the condition so that that helps. In knowing what’s good or what’s bad or what could be you know, helpful to do. So it does really come down to whether, you know, the parents understanding I think really or what they want to do and what their child is willing to do as well.

 Just to get as much information as you can from the doctor running the trial, even if, sorry, even if they’re not running the trial. Because in our case [Doctor] isn’t running the trial, but he’s our point of contact as well as the nurses. But he has the information on the medication that you need to know. Also just to build up a good rapport with your nurses, your research nurses. Because that’s their job, that’s what they’re there for. Don’t be, don’t be afraid to ask anything. Once you’ve, once you’ve checked in your own mind that everything’s been checked and double-checked and you feel quite happy, I’d go for it. I’d tell anybody to go for research. It’s just, it’s got to help. We’ve got to progress, haven’t we? And that’s the only way we can do it. So, yes, I’d tell people to do it.

 I would say, “Don’t be daunted by that initial invitation.” And also it was stressed throughout the booklet that you’re able to ring and speak to someone, and I found that helpful, sort of cutting through all the reams and reams of paper and speaking to someone. And also there was no pressure. So, don’t be put off phoning them, even if you phone them and are still not happy that’s, that’s not a problem.

 I think the thing is, to check on as much information as you can. The information they send you. To talk with the health visitors, would be useful because they’re always a very good source of information and see how they feel about it. But you can only really go with your own gut instinct on how you feel. No-one else can tell you what you should do with your child. But if you’re in anyway thinking about it, then the actual, the experience we had was very good.

 Well I would say that our experience has been very positive. I would say make sure they understand everything very well and that their child understands and is happy about it. But I wouldn’t say that there was anything particularly negative about the experience that we had and in fact it was quite good fun going up into the city and you know it was it was interesting. Yes so I wouldn’t say to them not to do it, you know, not to be, say not to be afraid. If it was something that might benefit your child don’t be afraid go forward and, you know, find out about it and have a go.

 Listen to your child. See what your child wants to do, and then see if they’re happy and get as much information as possible, and speak to other people first, so see what other people think about it, and get other people’s opinions first.

 Yes I think you have to trust them. Because you’re putting your child’s, you know you’re giving your child a, a drug that you know nothing about really. So you do have to trust them that they are actually you know, above board, you know.

 Well, I don’t think so really, other than to say that the, the monitoring side of things was actually very interesting. So doing the daily thermometer checks and, and the children actually really got into that, and it was almost like a competition who had what number. And, and they liked that part of it. 

 I think one, why you are making the decision would be the first thing I’d say to them. Are you doing it because you believe in the greater good or are you doing it because you’re doing it for selfish reasons, is that valid enough for you? Does your child react badly to injections and things like that would be the other question because if they do get, react badly this isn’t a necessary injection, I don’t, I don’t see, the vaccination against swine flu, I didn’t see it the same level as the vaccinations you that have against the childhood illnesses like hepatitis and diphtheria and all the rest of those and the MMR I didn’t see it on the same level as that I saw it as a much more minor illness and less potential side effects than you would have with say mumps and measles so it didn’t seem, it wasn’t something that I saw as absolutely necessary so therefore yes.

 If you give advice to other parents based on your experience who maybe wanted to take part in a clinical trial that’s similar, would you, would you be able to do that?

 I think in our country we have all benefitted from our health service and from all of those people previously who have given their, their time and tissue samples and effort and so on. And who knows what research breakthroughs we can contribute to if we can put a little bit of effort into the current research projects at the moment. Because there are still so many things which affect our children very, very seriously and so if we, if we can contribute to that research and it helps kids, it helps keep our children and the children of future generations more healthy then we should consider can I help, can I volunteer my child to help with that.

 But I would be encouraging other parents, other children to go for it and to give them as much information as I could for them to give the people asking the questions as much information whether they think it’s daft or not let the people asking the questions decide if it’s daft or not. Because at the end of the day, they’re going to be choosing what part of the interview is relevant, what answer is relevant, but by answering all the questions and enough people answer the questions, it could open another line, road for them to go down. Because previously they’ve thought either they are contradicting themselves or it shouldn’t be happening like that but if enough people are saying well maybe it isn’t a contradiction, maybe this is something that we’ve dismissed but now we need to look at because too many people are saying, I’m getting this as well.