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Clinical trials: Parents’ experiences

Reasons for wanting your child to take part: helping medical science and others

Although the main reason many of the parents we talked to agreed to enrol their children in trials was their child’s health, parents also thought about the importance of improving the treatment and care of other children and helping medical research.
 
In this section we focus on helping medical science and other reasons. The idea of improving care and making life better for their own and other children in the future was a common reason for parents wanting to enrol their children in trials. Watching their child cope with illness was, in itself, distressing for parents. Agreeing to enrol their children in a clinical trial could help their children, other children and medical research, and these were all positive things. For some parents the addition of personal experience and other family members’ health were also reasons for enrolling their children.
 
However, it is important to bear in mind that until a trial has been completed, no-one knows if a new treatment is better than the standard or existing treatment. ‘New’ does not necessarily mean ‘better’. Indeed, new treatments are as likely to be worse than existing treatments as they are to be better. The UK Clinical Research Collaboration booklet ‘Understanding Clinical Trials’ includes a useful section on the risks and benefits of trials (see resources).
 

Anything to help prevent other children from having migraines was one of the reasons Lucinda and...

Anything to help prevent other children from having migraines was one of the reasons Lucinda and...

Age at interview: 37
Sex: Female
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 And, to be honest, any data that we can give that helps look into migraine, especially with children. Because I know it’s awful for adults to suffer, but children don’t, don’t understand and they don’t understand their bodies the same. And as a parent you feel quite helpless when you see your child in so much pain. So I from my point of view, anything that helps discover anything about this, it’s a bonus, a big bonus.

 
Well, it, it has, it, the, both the drugs that are being trialled are currently used for childhood migraine, but they’d never done a study. And it can also, they’ve linked, see, the other side that didn’t want me to do it, childhood migraine they’ve found is linked to epilepsy. So treatments that are given for migraine are actually also used for epilepsy in children. Which, the symptoms are slurred speech, slowness, and I didn’t want him to fall behind in school. And that’s why initially I said no to medication in 2008. But I think because they got so severe, so I don’t really think we had much choice. We had to try something. Toby was going to be put on one of these medications anyway, so we thought, “May as well go ahead with the trial.” If they can get more feedback from parents and children, anything can help.
 
 

Karen knows from her nursing experience how important clinical trials are in helping improve care...

Karen knows from her nursing experience how important clinical trials are in helping improve care...

Age at interview: 29
Sex: Female
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 Yeah. And I, I think also a big thing for me was that I always feel we take it for granted that these things are available for our children, and, someone at some point has to be brave enough to say, “Yes I’ll try it.”, I think another big thing, a few weeks before we got this invitation, [my son] was very ill, and he’s got long term health problems now. But we know he, realistically was going to end up with experimental surgery or medication, and stuff like that it’s kind of putting your back into the system as it were. Does that make sense? 

 
And things like you know the meningitis vaccine would be beneficial to him later on as well. Yeah. I think, I think he had a big influence in this as well. Yeah. I was going to say even, even if that hadn’t have happened we probably would have gone ahead with it. But I think it’s played a much more important role to us than was expected.
 
 

Lisa’s own personal experience as a small child was another reason for wanting to enrol her son...

Lisa’s own personal experience as a small child was another reason for wanting to enrol her son...

Age at interview: 37
Sex: Female
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 And I had always been a smaller child myself, and I knew from my point of view being picked on and bullied, and I can, all I can remember of school is sitting there crying the whole time. And I wanted something better for my son; I didn’t want him to be picked on. And I thought that being, I was small as a female, being a lad would be even harder because lad’s are bigger and that, and I thought if he can’t do what he wants to do, even at four years old, he would be getting invited to birthday parties and some of them had height limits, and Callum couldn’t join in with other children, he’d have to sit out because of height limits. 

 
Well main, to start with it was mainly the, of what benefit’s Callum would get through it, and how it would make Callum feel and the rest of the family feel. And how Callum would feel at school and things? And then like once he got on it then you start thinking that it can have, this actually can help other people and it, and other children could benefit from what we’re doing. So if it helps one other person, and Callum’s always been happy with doing it so, if Callum actually said, “Actually by the way I don’t want to,” then I’d stop it straightaway because it’s up to Callum.
 
Some parents mentioned a more general moral duty. Parents described this as ‘giving back’ in gratitude for the care their children had received. This often included the idea that others had put themselves forward in the past for research, which their children were now benefitting from.
 

Having received excellent care for her daughter, Linda was keen to help other children with heart...

Having received excellent care for her daughter, Linda was keen to help other children with heart...

Age at interview: 43
Sex: Female
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Part of it was a] to help people and see if this could help other heart children. But also to help her in the hope that she did have the actual drug, so.

 
Very much so, I think. For the same reason I’m doing this today is that there’s a big part of wanting to give back. I’m fully aware of how much my daughter’s care is costing now and she hasn’t even had surgery. But it is a big part of wanting to give back, which I might not have had if I wasn’t a nurse and knew how much things cost behind the scenes.
 
Yes, yes and especially as her heart condition, although serious enough to warrant, oh how they explained her heart condition to me is that it’s one of the better ones to live with day to day, it’s still a horrendous one to have to fix. Although in all fairness they didn’t use the word horrendous you know, it’s still, she’s still requires a very large open heart surgery to fix it when she gets, when eventually her heart deteriorates to the point where she can’t when she needs the surgery. But she, day to day she’s still, you wouldn’t, you’d seen her you wouldn’t think that she has a heart condition. Whereas other children with heart conditions who have to gasp for every breath of air, if it could help them then, you know, that would be, that was sort of our main aim was, we, we would prefer not to have a child with a heart condition but as heart conditions go we got the milder one. So as sort of in gratitude for that we’re prepared to give back for the other children, so. 
 
No I’m just grateful to all the people who went before me [laughter] who did subject their children to different, you know, trials and, you know, things like [xxx] her, you know, cardiac testing stuff, you know. Obviously people went before me and I’m reaping the benefits from what they’ve done so you know, so thank you to them and their doctors for doing it so that I, well she can get the benefit but as 80% broken heart mummy about her, repairing, repairing my heart too, while her heart repair so yes I think it’s more of remembering that this didn’t just spring from someone’s head overnight, lots and lots of testing has gone into it so.
 
 

Vaccines have come a long way in helping to wipe out many childhood diseases and protect children.

Vaccines have come a long way in helping to wipe out many childhood diseases and protect children.

Age at interview: 54
Sex: Female
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 Yes I do well yes I do of course I mean where would we be if people hadn’t agreed to take part in trials, we just would in a much worse scenario wouldn’t we really?

 
And many parents have said that and some have said it’s about giving back.
 
Indeed yes.
 
Which is a rather interesting way of looking at it.
 
But it’s correct I mean even if you go back, you know 70/80 years lots of children were dying from childhood diseases and we’ve virtually eradicated that now. So it’s true, you know, sometimes it’s good to give back really.
 
 

Alison felt more willing to take part in trials because of the excellent care received.

Alison felt more willing to take part in trials because of the excellent care received.

Age at interview: 39
Sex: Female
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 How did it feel sort of being approached to take part in a trial at a time when it was kind of vulnerable?

 
Yes, it’s difficult, isn’t it? And it, and it’s one of those kind of difficult things when you’ve got someone in crisis yet you need really to get a signature off them ideally. And I could see that in the staff. I think part of my willingness to; to take part was that everyone was incredibly nice. And I mean the neonatal care we received was absolutely excellent, first rate. And I think that probably kind of helped us warm to being compliant and easy-going parents as, as far as all that happened. And I was also in the same hospital for my pregnancy, and again I had absolutely excellent care from the fetal medicine department. So we felt, not that we owed the hospital something. That was wrong. But, you know, that there was certainly a kind of bit of, well, you, we have been treated, you know, like royalty and they have kept a child alive which, you know, could have easily have died, and everyone has worked their hardest and absolutely done beyond their call of duty. So actually, do you know what, we can, we can do this, because we can see that it’s something that really matters to them. Had I not had such positive experiences I might not have been. I think possibly, but I don’t, it’s difficult to say, isn’t it? But certainly the atmosphere and the approachability really by the consultants, so, you know, very senior doctors making themselves very very approachable and explaining things very well certainly had a part in me saying, “That’ll absolutely be fine. Of course we’re happy to help.”
 
Rachel’s background in clinical trials helped her to understand how important they are and when the opportunity came for her children to take part in a swine flu vaccine trial, she felt this was something she could contribute to. She was unusual amongst the people we spoke to in not really seeing any particular benefit for her children. 
 

Helping medical science was a good reason for Rachel to enrol her children in a swine flu vaccine...

Helping medical science was a good reason for Rachel to enrol her children in a swine flu vaccine...

Age at interview: 35
Sex: Female
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 Well, it was the swine flu vaccine study, I would guess, rather than trial that was happening last year and the beginning of this year. So I just got a letter through the post because my youngest child had been born within the last two years, I think it was, or, I don’t know, whatever the criteria were. And then they also said that older siblings could take part as well. So we just thought; there were two reasons. One, I was interested in clinical trials anyway, because it’s what I do. So I thought, “I’ve got to give something back at some point.” And secondly I just thought that it would be, I wasn’t, actually I wasn’t particularly, “Yes, I really wanted him to have a swine flu vaccine.” It wasn’t something I really wanted. So it was more about the fact that they were looking for people to take part in, in the study comparing two different vaccines. So it was just really about, “Well, I can actually help with this one.”

Most parents we talked to put their children’s health first, but helping others was often an additional reason to take part. Jo’s son took part in a trial of migraine medication and commented, “I think you’re always going to put your family before you put others. That’s not in a nasty way. It was a case of 'we can do something here that might help Dan, and in the long term it might help everybody else'”.
 

Kathryn wanted to enrol her daughter in a trial to try and make things better for her, but also...

Kathryn wanted to enrol her daughter in a trial to try and make things better for her, but also...

Age at interview: 39
Sex: Female
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 And you feel like you want to do everything you can for your child. So that’s why you end up doing it. Because you think it’s going to benefit her. And that’s probably why I agreed to do it. Because I’d do anything to sort of make things better for her personally. But the more I thought about it, it’s not going to do, change anything for Chloe. Whether it does for other kids, I should hope that’s what it’s going to do. But I don’t know it will, because I don’t quite know what they’re doing with it. [laugh] But that’s why I would have decided to do it in the first place, because of, because of her. That’s why I would have said yes straight away. Because you’re doing it because you try and make things better for her, definitely. And anything you can do as a parent, you do it, don’t you?

 
Because the reason, the way we got invited this time, because we’d already done one with one of the nurses, and when we finished that one, that’s when she came to ask us about this one really to see if we was interested in doing another one. It wasn’t a nurse actually from the hospital, it was a nurse, do you know? and I can’t remember her name. So it was a nurse that doesn’t actually work there and I can’t remember her name. And because we were so keen to do that first one, because I think, as far as I’m concerned, and I think Chloe feels the same, anything we can do to help anybody else with the diabetes and how she feels and I feel, I think it’s, we’ll do anything. You know what I mean? Because there’s not enough information, I don’t think, out there really. And I, we find that now, after three years of being diabetic, there’s not enough information. People don’t really know enough about it all, especially with the Type 1. And, and I’m just quite happy to sort of have in, as much information as we can really. Because she just came to us and said were we happy to do… you know. It’s up to us, our decision. But, “Are you happy to do it?” And we just said, “Well, definitely, yes, yes, definitely.” There was no sort of hesitation in it really. Yes, because, you know, like you say, you’re quite keen to help anybody really to find out more about how everybody else feels and what, any help you can do really.
 
 

When her daughter was diagnosed with type 1 diabetes; it was a shock. The nurse explained about...

When her daughter was diagnosed with type 1 diabetes; it was a shock. The nurse explained about...

Age at interview: 37
Sex: Female
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It was my daughter’s nurse who invited me to, for this study. And I thought it would be good to take part in the study so that like parents like me who are facing diabetes with their children, the, it might, the study might get new things and would be, the study could help new parents, I think the parents who are new to diabetes, would help in any way to them, in a better way.
 
And how did she approach you?
 
She, when my daughter got diagnosed she came in the middle of night to the hospital. And it was really very surprising that she’s all 24 hours on job for this study. So that strike me that this study is really a big thing to help people and to get the better results in the future, to get better things in the future. So she spoke to me, she explained me about this study, and I was really encouraged to take part in that.
 
Did she give you anything to read as well as explain?
 
Yes, she gave me some questionnaires to answer and she gave me some notes to explain about the study, what is going on and what it will be.
 
Did they, did you understand what the purpose of the study was?
 
As far as I know the purpose of the study, some questions I didn’t know why they were asked. Like, “How much do you pay for, for the taxi?” or, “How do you come? Is the parking, is a problem?” Because if we are not getting help in that, why are we asked about that? So I didn’t understand some questions, but I thought it may be part of the study and it may be for the better in the future. So I didn’t mind that.
 
And what, when you had the information as well, written information, did you understand everything that they’d said? Were there any words or terms that you didn’t understand from that?
 
Some, some words I didn’t understand, but whatever I didn’t understand the nurse was so good, she gave me her phone number and I just called her; even if I called her at, in the middle of the night she responds and she explains the, what the things mean in the notes.
 
Tell me a bit more about why you felt it was important to take part in this sort of study on diabetes?
 
Because I didn’t know anything about diabetes. And it, it came into my life as a blunder. So I thought like I am facing this, other parents might come across the, the same situation, and if I could help a little to get a, better for them taking part in this study. So that’s why I thought it is good.

 

 

Ann was keen to help other parents and their children who may be diagnosed with Grave’s disease....

Ann was keen to help other parents and their children who may be diagnosed with Grave’s disease....

Age at interview: 43
Sex: Female
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Well, we just got, we just noticed a little lump on Emily’s neck. And at the doctor’s the next day we got a couple of tests done. And she was rushed in then, over the next week or so to get more tests done. We found out she had an overactive thyroid. We didn’t know the consequences of an overactive thyroid. But it’s frightening. It is that, yes, it’s frightening. You don’t understand it at first, but you get used to it. And then we went to do the trial, which, they randomly picked a treatment for her, to see which would be better to treat Emily, or to treat anybody really. Because they don’t really understand it. And we’ve just gone from there. She’s been rushed in hospital one time. Her heartbeat was 158 beats a minute. Which was quite frightening. It’s all thyroid related. She had, she’s got a, a heart condition, and her heart swells and she’s got fluid round it. But she’s dealing with it. She’s getting there. But, as I say, it, it is frightening, because you don’t understand it.
 
I can imagine actually. It must be quite, you know, how much they understand and how much they don’t understand.
 
Yes, well, I don’t think she fully understands the severity of her condition. She just thinks it’s one of them, the mood swings come along and her heart races and she starts panicking. And she doesn’t understand that if she does calm down her heart will calm down a little bit. But it will always be faster with the thyroid than without the thyroid problem. But she’s getting there.
 
And at that point, because it was soon after the diagnosis, they invited you both to take part or invited your daughter to take part?
 
Yes.
 
So how did that feel at that time? Because she’d just been diagnosed and then you know the trial and…
 
Well, to be honest with you, I was all for it because I didn’t understand it and maybe with, going through with the trials I would understand it a little bit more. And it will help other people. Because, as I say, you don’t understand and you don’t realise what comes with the thyroid problem. And if you go through the trials and you get explained different things, different times, it helps. It really does help. And the nurses with her and the doctors have been absolutely fantastic. I couldn’t ask for better treatment. It’s just, because you’re on edge all the time, and when you speak to the doctors it lifts it a bit. So you’re a bit more relaxed. So you get to understand it that little bit more.
 
So was that one of the key reasons for taking part, do you think?
 
The key reason was if I could help somebody else understand and get through it, the better it is for everybody. Because it’s so uncommon for a child to have an overactive thyroid, that to understand it, you need to do these trials. You need something there to help other people and help yourself. So, fingers crossed, we’ll get there.
 

Grave’s disease is the most common cause of an overactive thyroid and is rare in young girls. Quite often parents said they were happy to enrol their children as they could see few negative consequences, as Vicky explains.
 

The decision take part is easier when the risk is minimal. If the risk had been greater, Vicky...

The decision take part is easier when the risk is minimal. If the risk had been greater, Vicky...

Age at interview: 39
Sex: Female
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 Well I didn’t see any negatives in doing it. In, sort of in not doing it there, there wouldn’t have been any, any, it wouldn’t have helped anybody. We wouldn’t have been any better off apart from, you know, not having to sit and do the questionnaires, which really wasn’t a chore at all. There was no reason not to. You know, it wasn’t a major dilemma. You know, if, if it was all about treatment and things like that. I mean I know information is treatment as well. But, so there were, there wasn’t really much of a, you know, the motivation was, “Well, we might as well, seeing as we’re here. And, you know, it, it might help towards changing things for the better, if that’s the way it needs to be.”

 
I suppose if, perhaps if there’d been some change to treatment or some other risk there –?
 
Then it could well have been different, I think. Yes, because obviously, yes, if there had been change to treatment which potentially would have an effect on her health, then I think that would have, you know, we would have had to have considered that a lot more, yes.
 
Others mentioned the fact that the trial did not involve invasive treatments or tests as an important factor. One parent said it was easy to take part because they lived close to the hospital so there was little disruption to their lives.

Being able to offer their opinion about a treatment was another reason some parents were happy for their children to take part. For example Jane says “I think, if I thought it would help someone or I thought my opinion might have an impact some way, then I was happy to do it.” 

Last reviewed September 2018.
Last updated July 2015.

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