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Clinical trials: Parents’ experiences

Messages to Parents

Overall parents we talked to were pleased to have enrolled their child in a clinical trial. They felt they had had a good experience and most felt their children had benefited from taking part. Many said they would consider enrolling their children in future trials. (See also ‘Views on future trials’).
 
Based on their experience, parents gave some messages for other parents who may be thinking of enrolling their children in trials, such as getting plenty of information and asking questions, listening to your child and involving them in the decision, being clear about any side effects, and being open to the possibility of your child taking part.
 

Making an informed decision whether or not to enrol your child in a clinical trial is essential...

Making an informed decision whether or not to enrol your child in a clinical trial is essential...

Age at interview: 49
Sex: Female
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 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.

Sometimes researchers and health professionals use terms that parents may not understand and there may be a lot of information to read and take in. It is important that you ask about anything that is not clear to you or your child.
 

It's helpful to write down a list of questions to ask, no matter how silly they seem.

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It's helpful to write down a list of questions to ask, no matter how silly they seem.

Age at interview: 38
Sex: Male
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 So I have to say, particularly one, with one of the lady specialists, she says, “Don’t mess about. Just give me the list.” And I go through them. But she’s quite happy with that and will go, “Yes, no, yes, no” and answer the list. And then everyone comes away informed. And in the same way about illness you do that, to say, “Sarah suffered this on such a day, that, that.” So for the, for the clinician, instead of asking a dad or a mum who may be agitated, maybe doesn’t remember, you can go, “There’s the last month’s history of illness.” Because we record it in the diary that’s useful to them and that process brings them on side to your list. And they then will say, and I would say, if you were dealing with a, a more complicated trial, and I’m sure there’s vastly more complicated trials, I’d certainly think to sit down and go, “Here’s my list of questions. Can you help me with them?” And in, in the end that will probably help them to alter their information sheet to the general public’s thinking and go... You know, we, we, because we all think in our own world. A clinician and a, and a trial operator will think of it from where they are and you’ll try to say “If I was a parent.” But it’s very hard to switch off. I know we, we say, “We won’t use abbreviations and we won’t …” but you don’t think like a mum who knows nothing of the subject. So if you had a few people in the early stages of a trial and you said, “Make a list of what you want to know” it might be a useful way of, of clarifying your information sheet so that everyone… Because it’s not about hiding information. Most people doing the trial are quite happy that you get it. The happier you are the more likely I would think you are to carry on and participate.

 
Yes, as I say, just don’t be afraid to ask questions, no matter how silly they seem. Because they’re obviously important to you. Which is what we did with that nurse; every day we would phone her, saying, “I know this is silly, but” because things just come to you all the time. As Chris said, write them down and then don’t be afraid to ask.
 
 

Lucinda says not to be afraid to ask questions, especially if your child will be taking any...

Lucinda says not to be afraid to ask questions, especially if your child will be taking any...

Age at interview: 37
Sex: Female
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 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.

 

Karen says not to be daunted by the amount of information and there are always contact numbers to...

Karen says not to be daunted by the amount of information and there are always contact numbers to...

Age at interview: 29
Sex: Female
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 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.

A doctor, nurse, or other researcher should always ask you whether you consent to enrol your child in a clinical trial. Your child cannot be entered in a trial if you do not give your consent. It is important that you have enough information to make an informed decision and an opportunity to ask as many questions as you like. See also ‘Information parents receive when invited to enrol their child’ and ‘Making the decision about enrolling your child’.
 
A few parents found it helpful to speak to others but stressed that, in the end, it has to be your own personal decision.
 

Talking to others such as health visitors can be helpful but you need to go with your gut instinct.

Talking to others such as health visitors can be helpful but you need to go with your gut instinct.

Age at interview: 44
Sex: Female
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 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.

Parents also felt it was important to involve children in the decision, where possible, and listen to what they feel about taking part. (See also ‘Involving children in decisions’.)
 

Make sure your child understands everything and they are happy to take part.

Make sure your child understands everything and they are happy to take part.

Age at interview: 54
Sex: Female
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 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.

 

Lisa wanted to know what the benefits would be to her son and talked to him to make sure he was...

Lisa wanted to know what the benefits would be to her son and talked to him to make sure he was...

Age at interview: 37
Sex: Female
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 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.

 
That’s good. And do you think it’s important, I mean you mentioned about it’s good to help others taking part, do you support sort of clinical trials in general, that is important for children to take part?
 
I suppose it all depends what you was actually testing for and whatever, but for the growth hormones, Callum would be on growth hormones anyway, so having a bit with his growth details and blood results and things put in, into a trial, I don’t think it’s going to harm Callum, so it all depends what the trial was and what it was for then I suppose it depends.
 
You just have to rate each one on...?
 
Each, each trial would be different, and each child is different. And each person is different with their home life and things, so I suppose everybody would have to take it into consideration.
 
And if you were in my position sitting here and talking to a parent is there any question that you would want to be asking a parent about involving a child taking part in a clinical trial?
 
Just that all parties are happy with what they’re doing and things like that, and that they actually know what they let themselves in for, and was happy in doing that.
 
And is there any burning thing that you want to say that maybe I haven’t covered or asked or something you feel may be important that I’ve missed, about you, or just thinking about the whole experience that you’ve had? Going through everything from the beginning to…?
 
No not really, I think just as long as you know what you are actually doing and things like that, which we took great looking into and what was best for Callum, and it has actually benefitted Callum. If it was something what hadn’t benefitted then, then the experience was, would’ve been different.
 
So you had to think about what the personal benefit’s are?
 
Yeah, and what the outcome is going to be, so we’re blessed that the outcomes have had, given Callum, growth hormones have actually worked out good for him. I suppose not every child is going to work out like Callum’s trial has.
 
It was important to parents to trust in health professionals, and reassure themselves about the safety of the trial and knowing that they could withdraw their children. (See also ‘Making the decision about enrolling your child: parental consent’ and ‘Withdrawing your child from a trial’.)
 
Lena’s and Rachel’s children took part in a swine flu vaccine trial. Knowing that the vaccine had already been licensed was reassuring to both parents. Ultimately parents have to be sure they are happy to enrol their children. In Rachel’s case, her children enjoyed taking part and being monitored.
 

The vaccine had already been tested and they could withdraw at any stage of the trial.

The vaccine had already been tested and they could withdraw at any stage of the trial.

Age at interview: 44
Sex: Female
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 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.

 
The fact it was evidenced already [Yes. Yes.] was important?
 
Yes, yeah. Yeah. That they weren’t actually trialling the drug, it was just trialling which drug, but yeah.
 
And it makes it’s important. [Yeah.] Do you think it’s good that healthy children are involved in sort of clinical trials?
 
Definitely, yeah, yeah definitely. Because as I’ve said, if you, my son wanted to do it because he was, I think he was worried about what was going to happen to him. But you, I think it; you can’t advance science unless people can help out on these things really. But again it’s up to the parent’s individual choice. And it’s only their gut reaction they can go with really. But we found that we could have pulled out at any time, so even if you start these things, you don’t feel, I wouldn’t, I didn’t feel trapped into it at any point that I had to continue if, we wanted to continue.
 
Having been through it you know, from your own experience, what would you want to ask that parent? Why did you enrol your child?
 
Yeah, I’d want to know what made them choose, decide to do it really. I think that would be, well why did you decide to go ahead with it. But for us that’s almost an easy question because it was the swine flu that everyone, it was on the news every night. The numbers of how many people were dying, or the number and the helpline and everything. It was, we felt that if we could help and help our daughter as well, then you know we had three children, at least if one of them was vaccinated then it was a start really so.
 
 

Apart from the blood tests, Rachel’s children enjoyed taking part in a swine flu vaccine trial.

Apart from the blood tests, Rachel’s children enjoyed taking part in a swine flu vaccine trial.

Age at interview: 35
Sex: Female
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 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. 

 
But no, advice to a parent; just really that its fine. In, in that particular trial they were licensed drugs. There was no added risk than any other vaccines. I mean there is a risk because it’s a vaccine and there’s a risk with any vaccines, a risk with any hospital trip. It doesn’t matter. So it would be just to make sure that you really wanted to do it. I think I would probably warn them that they would be taking blood a couple of times. So that would be something to consider, that, if some parents really don’t want that. That was, it was part of the trial that you had to try to take the blood. That was the element where it came in. That’s where I got confused. So they would have to at least be consenting to say, “We will try.” So I think I’d just make it clear that that was a process they had to go through. But I think other than that it would just be reassurance really. I find it hard to reassure people on trials, because it’s what I do. So I feel very much like I don’t want to coerce anyone in, to push them. But for me trials are fine. And I think I’d just explain to them that actually we found it really interesting, and the older two really enjoyed taking part and were really very proud of taking part.
 
Ruth advises other people to think carefully about why they want their child to take part and what is involved.
 

Parents might want to consider if their child has reacted badly with any previous injections...

Parents might want to consider if their child has reacted badly with any previous injections...

Age at interview: 38
Sex: Female
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 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.

Of course, when you are considering enrolling your child in a trial there can be a mix of things to consider, including the benefit to your child’s health, the value of helping to increase knowledge for future children, as well as what is involved in terms of time and commitment. Both Alison and Julie talked about the individual cost compared to the wider implications of helping to advance health care and the future of our children’s health.
 

It’s really down to the individual being open to support research and helping other children, but...

It’s really down to the individual being open to support research and helping other children, but...

Age at interview: 39
Sex: Female
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 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?

 
Yes, I would do. I, you know, well, I’d be very hesitant to, well, I would do, but I’d also be hesitant to, because I think your, you know, your individual circumstances and your personality play a huge part. You know, if it was something that was going to worry you or trouble you, then don’t go down the road of doing it, you know. And I think you have to respect, you know, you know, respect where people are in their life situations and everything. But, you know, I feel it’s important and I feel as a society it’s important that we support medical research. It’s hugely important, you know. 
And for us looking at the kind of quality of neonatal care and how that’s developed, you know, hugely in the last twenty years and continues to do so in leaps and bounds, I mean, you know, it’s an area of medicine where technology is just expanding and, you know, incredible, I think is really important. And you almost feel like you do have a responsibility, if you can, because that’s how, that’s how it works. So I think it is important to kind of encourage kind of selfless, selflessness really, isn’t it, in potential patients. And I think that’s a really important quality that society somehow ought to nurture. So, yes, you know, in principle I think you should. It’s the individual cost, isn’t it, and working that out. And that’s where the difference is for people. But, but I think a willingness to at least read through some literature and consider it, you know, is something somebody somewhere in a hospital or on a board somewhere should, you know, should be thinking about. And I don’t have the answer of how you do it but, you know, I do think it’s an important attitude.
 
 

Helping other children and helping increase knowledge are good reasons for considering to enrol...

Helping other children and helping increase knowledge are good reasons for considering to enrol...

Age at interview: 45
Sex: Female
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 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.

 
Yes, yes I think we all expect to be able to go to our A&E department in case of an emergency and that blood will be available and yet so few of us are actually blood donors. And if you stop and think about it how are these researchers going to be able to do clinical trials unless some of us actually volunteer for it?
 
I would just like to encourage more parents to consider taking part, it might not always be suitable for your child; you might decide that you don’t want to put your child through a particular trial. But if more of us even considered letting our children take part then we’d make such a positive impact on research which of course can only help improve our children’s lives and their health.
 
Steve’s son has been taking part in a research study since he was born and likes to feel they are both helping to advance medical knowledge for other children in the future. (See also ‘Other types of medical research’.)
 

Giving the researchers all the information about his son’s condition might provide a new avenue...

Giving the researchers all the information about his son’s condition might provide a new avenue...

Age at interview: 49
Sex: Male
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 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.


Last reviewed September 2018
Last updated June 2013.
 
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