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Clinical trials: Parents’ experiences

Involving children in decisions: child assent

When you are approached to give consent for your child to take part, you may also be given an assent form for your child (see below). Children under 16 cannot give formal legal consent, which has to be given by a parent or guardian, but they can and should be involved in the decision as far as possible.
 

Prior to giving consent to take part, it is important that families receive and understand...

Prior to giving consent to take part, it is important that families receive and understand...

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 In clinical trials for adults, the adult gives consent to take part. But for children taking part in studies the situation is very different, because the consent is given by an adult parent or carer who is not themselves the person who is going to undergo the trial and the benefits and the risks. So the situation is different. And researchers need to explain that carefully to families to under-, to, to ensure that they understand that. Of course parents and carers consent for their child’s care in general, and this process of consent is similar for research. But it’s important that they receive and understand carefully the written or other information that’s provided to them, so they’re clear which parts of the care are research and which parts are part of routine care. Older children who understand what is, is being suggested can also take part in the process of agreeing for research. We call this assent, and it’s a process whereby a child gives a positive response about taking part in research. And this, this concept of assent varies actually from different countries. Some countries don’t even recognise it. And the age at which assent is appropriate varies from country to country. But in general terms, assent is something, is a process that should be sought by a researcher in a child who has a, an understanding of the research process. It’s also important to recognise that this process of consent and assent is an ongoing process. It’s not just a one-off ‘yes’ at the time of signing a piece of paper. It’s ongoing through the study and can be withdrawn at any stage, and researchers will respect that. 

 

Helena, a senior research nurse explains the age at which children can give assent and consent.

Helena, a senior research nurse explains the age at which children can give assent and consent.

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 At what age can, what age do children assent to take part?

 
For some studies information sheets produced from children from three which are three to five which are basically pictures. And if you’ve given information sheet there’s a lot of the sponsors who are running the studies like the children to give their assent. So they like them to say yes okay I’ll do this. It’s debatable at what age is appropriate and that’s something that varies from people to people and from researchers to researchers. But obviously fifteen year old knows their mind and as long as they’re given the right information you will always get assent from them but because it’s a clinical trial you wouldn’t be able to give consent you would still need to speak to the parents. And then if there’s a difference of opinion that’s something that needs to be discussed locally and decided on whether you’re going to put that patient in the study or not.
 
So sort of aged sixteen and over, under sixteen they still have to have, even if they agree, they’ve still got to have parental consent?
 
Yes, until the child's sixteenth birthday, if it’s a clinical trial of a drug, the clinical trials regulations state that parents give consent and if the child is aware enough about the study and are able to we would take assent from them, once they’ve been given all the information as well.
 
Assent means children give their permission or agreement to take part in trials. It requires that children understand the research process and are informed about what they are expected to do. In considering assent, children can talk about their views and any worries about participating in trials. Doctors need to listen to the opinion and wishes of children who are unable to give full consent to a trial, and do their best to gain their assent. All children have the right to receive information given to them in a way that they can understand, and to consider assenting, or not. Both consent from parents and assent from children is needed if a child is to take part in a trial.
 
For the majority of parents we talked to, consent was their responsibility because their children were under the age of 16 years. Most of them felt that it was important to involve children in the decision in some way, unless they were babies or toddlers, but the extent to which people felt this was possible varied. (See also ‘Making the decision about enrolling your child: parental consent’.)
 

Karen took responsibility for giving consent for her daughter, aged three years, to take part in...

Karen took responsibility for giving consent for her daughter, aged three years, to take part in...

Age at interview: 29
Sex: Female
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 I wouldn’t say it really came into it because we didn’t, we didn’t give her an option. But then also when they came it was, it was a very positive experience the, it wasn’t scary to her at all. And it seemed like a game. And the fact that she got her sticker chart, and you know did all these things; she has to do certain things to get the stickers, and to her that’s, that’s on her wave length. And that’s kind of as much as she needs to understand, and yeah. And her impression was that they came to play with her. She said to me about a week later, “Those ladies came and hurt my arm.” And that was all she said about it. But other than that, she felt they just came to play and read books with her, that the injection and the blood test side of things was kind of a side line to her.

 

When her son was younger, Alison took responsibility to enrol him in trials, except when blood...

When her son was younger, Alison took responsibility to enrol him in trials, except when blood...

Age at interview: 49
Sex: Female
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 And then, as I say we were at the [Hospital] and they were at the point of sort of saying “Well we’ve got this trial on the go, we need some, you know, would you mind a small test since your here”. And I would think yes that’s fine by me. Yes Robert, hearing what he said they would, we would give him minimal information because at that point, certainly you know, as an eight year old decisions about him were down to me really. And yes it was explained to him beforehand well this is just going to happen, you don’t mind do you and in the main he was fine. The only times that we refused it or listened to it and then said no were when it was going to involve blood tests because of his needle phobia. But otherwise pretty much in the main, he just saw it as oh that’s another thing to do, I’ll do it, we’ll do it, we saw it as a yes we know what the ultimate goal is. We know that along the way they have got to look into and collect data, try different things out and they need, you know, people to take part to do that. And it wasn’t intrusive on our lives particularly because usually we’re in clinic, it just happened as an add on maybe once or twice it delayed us leaving the hospital by maybe half an hour or an hour or something. But at that stage when he was a young child or as a child, it didn’t involve us having to make special trips, you know, up there to take part in the trials.

 
As he got older I probably consulted with him marginally more but not a lot more because in the main he was very comfortable with relating to different people. That’s something that had been very apparent right from early on and I think that’s because of all the hospital treatment that he underwent right from day one. He’s always related very well to, you know, adults and he’s not been fazed by, as long as there’s not a needle attached to it [laughter]. Yes, you know, he’s been, you know, very compliant, you know and very good. So but as he got older we would probably look at each other, he would be there as they were explaining it to me and then I would sort of say to him well if you’ve got any questions, are you happy to do this because I’m happy for you to do it. And it would happen like that. 
 
As with Alison above, some parents said they will involve their children in the decision to take part in trials as they get older and are able to communicate their feelings. Linda’s daughter’s first trial was as a baby.
 

Linda will involve her daughter in making an informed decision about taking part in trials when...

Linda will involve her daughter in making an informed decision about taking part in trials when...

Age at interview: 43
Sex: Female
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 Yes I would, yes. I, now would probably wait until she was older to be able to make more of an informed, not consent but where she could take, we’re getting to that now where not her, not her cardiac hospital but her, the hospital, we live about an hour away from her cardiac hospital but we have a local hospital, the local trust uses her for exams for the diploma in child health or the diploma not, the membership for the Paediatric exams. And she’s now getting to the point where I won’t just say yes, I will ask her whether she wants to go and do it because that now her little body is changing and things are becoming more and more sensitive about, you know. Taking her top off for any Tom, Dick or Harry whereas when she was three or four the promise of a lollypop was enough to sort of. And now I would involve her more in the decision but trying ultimately to steer her towards saying yes.

 
I think as she gets older she will have more say.
 
Yes and certainly even now she’s an exceptionally bright little girl so she is more able to sort of say what she wants to do and so.
 
 

Now that Alison’s son is older and able to communicate his feelings about taking part in trials,...

Now that Alison’s son is older and able to communicate his feelings about taking part in trials,...

Age at interview: 39
Sex: Female
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 After the first year we then agreed to continue to have extra bloods taken. And also they do this day assessment where your children have to fast and they measure your blood glucose levels, and this extra scan. And we agreed to all that, knowing that we were having more tests than was absolutely necessary, with an overview of, “Well, actually it’s going to be of benefit medically in years to come, but there’s actually no benefit for us now” because it’s just an extra set of bloods, it’s just an extra test. So we did, we, we’ve done that and we’ve actually decided to stop now. We, we’ve come to the end of that period and they asked if you want to carry on and we’ve said, “No”; the reason being that our oldest child is eight and he’s at an age where he doesn’t want to have blood taken, and actually now he doesn’t need to have his blood taken. I think it might just be once a year, if that, or something. You know, we’re really down to the minimum, minimum things with the whole, the whole thing. And actually he doesn’t want to. And so that’s fine and I have to respect that. 

Lisa’s son was four when first approached to take part in a growth hormone trial. Lisa recalls the aim of the trial was to find the best dosage of growth hormone for different children.
 

It was important to Lisa to involve her son in the decision to take part in a growth hormone trial

It was important to Lisa to involve her son in the decision to take part in a growth hormone trial

Age at interview: 37
Sex: Female
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And did you talk to him, to your son, about taking part in the trials?

Yes. We sat Callum down and we said about the growth hormones and taking the trial. And said to him about it and what he wanted to do. And explained that if hopefully taking the growth hormones daily would help increase him to grow, and it was up to him if he wanted to take part in it, or not have growth hormones or anything. And he said that, his words were, “Mummy I want to be like the other children.” So to me he wanted to be and like the other children, and we said it would be like an injection every day. And he said, “Well Granddad has it.” He’s a diabetic, “So Granddad has injections so I’ll have injections to make me grow.” And he’s been fine having injections. And he’s just recently learnt to do it himself so he can do it himself now.

Yeah, and we’ve said to him that any time he didn’t want to, but he said that if that helps other children or other people Mummy then I’m helping other people. So he’s like quite proud that he could be helping other people in the future, and he said they could help other people who were born small like me, because he knows that he was born small, and never caught up. So he thinks that if he does this then it will help others. And he like knows that any time, I’ve said to him if anytime he wanted to come out of the trial he could come out of the trial, and just carry on with his growth hormones. But he’s quite sensible and he wants to do it anyway. Because I thought, being a Mum, I’d let him have the, because it’s his life, let him have the decision.

Tina was keen for her two children to take part in a swine flu vaccine trial. She had responded to an advert in a local newspaper looking for volunteer children aged between 2 and 12 years. Tina spoke to both her children who were keen to know more about it.
 

Tina's children had the final decision in whether they wanted to participate in a swine flu...

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 Yeah. And you think it’s important also because you mentioned to talk to the children about it so it’s very important you think to make sure they’re involved in the decision.

Oh, absolutely. I mean we said to them that if either or both did not want to do it then fine. And we told them we thought it was important to have the protection but ultimately they had to be happy with it and understand why. So yes, I mean yes; I think, you know, they needed to understand what swine flu was; they needed to understand what a vaccine does. They needed to understand a little bit about what that meant. And in some ways I mean I guess I suppose with our youngest daughter she may have known too much, because I think she knew that blood tests are going to take some blood out. I think that probably, the reality was very different to her fear that you know I think she, she thought they were going to scoop blood out somehow and so I think we should probably maybe either have been completely clear, well been completely clear in one way or another.
 
Yes. Well because she does say, she said “I thought they were going to spoon it out”, because I think that’s what they said to her was “We are only going to take a teaspoon”. And her image was [suggestion of spooning blood out of arm], yes.
 
Kathryn and her daughter were invited at a routine clinic appointment to participate in a randomised trial on managing diabetes in children and young people. The nurse explained the trial and gained their consent while they were waiting to see the doctor. It helped knowing they would remain anonymous and could withdraw at any time.
 

Kathryn’s daughter was hesitant at first because she was unsure what was involved; but after the...

Kathryn’s daughter was hesitant at first because she was unsure what was involved; but after the...

Age at interview: 39
Sex: Female
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 I think it was just because it was just out of the blue. We didn’t have any prior warning. We were just sat there, as we do every three months, we sit in clinic. And she just came up to us and just said; “Hello” I can’t remember her name, “Would you be interested in, you know, participating in this survey?” And then she told us a bit about it and obviously... I said yes. Chloe was a bit hesitant. Because twelve months ago she wasn’t as open as she is talking about it. She was very uncomfortable about talking about diabetes. Didn’t really like want anybody to know. So she wouldn’t really talk about it that much. Whereas now she is more comfortable. Still doesn’t like it. If you asked her, she doesn’t like it, but she will, is more open about it. So she was a bit hesitant. And, and I think even after we came away, we said we’d do it, she still wasn’t sure. I think because, I think she thought it would be more involved than it actually was. I think she thought they were asking more of her than they actually were. And really they were only asking, every time we went to clinic, to fill this form in and that was it, there was nothing else to do. I think she thought things were going to come to her house and she’d have to give up her time and do it that way. But it, no, it wasn’t like that. So I think she was surprised really.

 
Did you make the decision there and then?
 
We did, yes, did, definitely, yes. Because I didn’t see that there was any loss in it really to say, “Well, yes, we’ll do it” you know. It’s anonymous, it was, there was no, there was no, and if we changed our mind three months down the line we just didn’t have to do it. 
 
You just try and think of ways to support other people really. And if there’s any, anything that they want to know and they’re not getting any help with, then... I don’t know whether it helps or whether it doesn’t. But you feel like you want to try anyway, if nothing else.
 
And, and Chloe was happy with that?
 
Chloe was happy, yes. I think she looks for me. If I feel happy, then she’s fine, you know. If I have doubts, then obviously she’s got a, she tends to follow me really. And if I feel like I’m all right doing it... And she’s not daft. She knows why, you know, why we do these things and why, you know, I was saying yes. And she’s quite happy then to sort of do it as well.
 
Some parents talked about their children having their own pack of information. Sometimes the health professionals would come to the child’s home to explain the trial to them. Sometimes they would demonstrate what was involved, for example using Emla cream (a local anaesthetic) when blood samples were required. This involvement of children by health professionals was important to parents and gave children the opportunity to express their concerns and views. In Nikki’s and Chris’s case, their daughter was diagnosed with asthma at the age of 18 months; she is now aged 6 years. They were invited to enrol their daughter in a research study on children with asthma who also take inhaled corticosteroids.
 

Nikki and Chris’s daughter liked having the nurse come to their home and explain the trial; it...

Nikki and Chris’s daughter liked having the nurse come to their home and explain the trial; it...

Age at interview: 38
Sex: Male
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She did and she was very down to earth. You know, she just came in, got on the floor and was like, “Right” you know. And that’s what you want, that’s what kids want. They don’t want somebody white coat sat there that they feel they can’t talk to. You know, Sarah asked her questions and felt like she could. Which, which has, you know, helped her because she, she knew, and if she had any questions we’d say, “Well, we’ll phone the, the nurse” you know. Because she knew her first name, that’s what, you know, “We’ll, we’ll phone her and put your mind at rest” or say, you know, “She’s coming out today to see you.” And so she felt a bit special, that somebody’s coming to see her and it’s her special nurse.

 
Makes them feel important?
 
Yes, yes.
 
And I think it’s good as well, it sounds like they can call them by their first name, but they also want somebody perhaps that’s confident…?
 
Yes, yes, exactly. With children, you can’t. You’ve, you’ve got to appear absolutely you know what you’re talking about. And she also, was good, this nurse, because she said to Sarah, “You’re helping other children.” Now Sarah loved that, loves to think that, you know, she’s helped some children. Which is what she tells everybody, you know, “My doing that has meant that I have helped hundreds of children,” which, it made her feel special when it was explained to her that what she was doing was important. You know, there was a reason for her doing it apart from us finding out about her. But she’s helped so many other people and, and she loved that aspect of it.
 
 

Because their daughter was very poorly, Nikki and Chris could see the value of giving consent for...

Because their daughter was very poorly, Nikki and Chris could see the value of giving consent for...

Age at interview: 38
Sex: Male
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 So later on it, you know, it, when we did the trial it was important because we, we wanted to know. And we could explain to her as well that, “You’ve been so ill.” Because she, you know, this, was from the January to the March, and it was the March when we got asked to do it, “You know, it, we might just find out something and be able to help you.” And because she had been so ill as well, I think she was a bit more receptive to, because she’d had enough, hadn’t she? You know, she, she kept saying, “Why me? Why am I always ill? Why. ?” And then, so we were able to say, “Well, let’s see if we can find out.” And, and, and the nurse said that to her as well, didn’t she? So, so it was more, there were all positives for her at that point rather than all she focused on the time before was blood tests, “I’m not having it.”

 

Jo’s son felt special when the nurse came to visit him at home. He was happy to take part and...

Jo’s son felt special when the nurse came to visit him at home. He was happy to take part and...

Age at interview: 28
Sex: Female
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 And I think when we sat down and explained it to Dan, one of the, one of the reasons we used or explained to him as a child would be that, “If you do this and, and other children do this, then in a couple of years’ time maybe, maybe little boys and girls won’t have to suffer with headaches like you’ve done.” So that’s how we explained it to him and that’s probably how I’d explain it to somebody else who asked, “Why would you choose to put him on a trial?” 

 
Yes, he was. Dan, Dan, bless him, he’s so brave when, when he has a migraine and he’s sick for such a long time. It’s normally around eight hours, constantly. Probably around every twenty minutes to half an hour he’s sick, for around eight hours. He can’t eat, he can’t drink. He barely manages to keep his eyes open in between being sick. And he wouldn’t’t wish it on anybody. So by explaining to him that, you know, “You’re going to help other people if this trial’s successful” he was like, “All right, that’s fine.” Because children are like that, aren’t’t they? 
 
No, we, we explained, in the beginning we explained to him exactly what, what was going to happen and that he’d take tablets every day in the hope that he wouldn’t be, with Dan we explained, you see, he’s sick more than his head hurts, if that makes sense. He’s still at an age where it’s not progressed from a bellyache to a full-blown headache. He still gets extremely bad bellyache as well as the headache, so we’re in like a transition period with him. So we just explained to him that, “By doing this, you know, there’s a chance that you won’t get the bellyache and the headache as much, and that you’ll stop other, other children from having to go through it as well.” And Dan, being Dan, was more than happy with that explanation.
 
In some cases children were also asked to sign an assent form.
 

Lucinda’s son had his own information to read and an assent form to sign; he was involved in the...

Lucinda’s son had his own information to read and an assent form to sign; he was involved in the...

Age at interview: 37
Sex: Female
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 And then they spoke to my son as well. I was obviously in the same room but they weren’t directing questions to me. They were talking to him. And they asked what he thought about it. Rather than just putting him straight on medication, they explained that it would be really helpful because nobody had ever done a study on childhood migraine before, and would we like to participate? 

 
Because Toby’s 10, he can sort of make his own mind up. We discussed it, and at first he was a bit dubious about it. And I said, “If you’re going to go and get put on medication anyway, you may as well try and help them in the studies.” So we had a third appointment, where he saw the research nurse on his own. And he came out of that appointment and he was really happy to do it. So we started the research. But all the way through the communication has been fantastic. They’ve answered every question that I’ve had.
 
And you had all the, I mean was it written information that you had?
 
Yes, everything was written. They sent a copy to myself and also an easy, readable version to Toby, in child-friendly terms, which explained everything to Toby as well. So we could both understand what was being said.
 
Yes, a big part of it, a big part of it. Dr is very approachable anyway; he’s very down to earth. Doesn’t talk down to the children either. So Toby felt that he could trust him. And in the initial assessment, we were there for two hours. Which seems quite a long time, but when you’re laughing and joking and he’s making Toby do silly walk... A lot of it is to make him feel at ease, as well as checking balance and things. A lot, a lot of it is to make the child feel at ease. But the nurses were lovely as well, really pleasant, very forthcoming. You don’t feel as if there’s a barrier, you don’t feel as if they’re ‘up there’ and you’re ‘down here’ and you can’t speak to them properly. Just really approachable on all levels. So it was quite comforting actually.
 
Well, we talk about everything anyway, because we live together on our own. There’s only me and him. But this was, we do talk about things, but this was a major part of his life because he was going to be taking medication in the morning and at bedtime. So it was a big part of his life change. So we talked about it before he started the medication. I wanted him to understand that it was his responsibility when he wakes up to take the meds, when he goes to bed. And he has. He’s done it. I still check, but, yes.
 
Well, I think it’s good, like you say that he has his own information. And, and did it come, I mean was it all words or were there words and pictures?
 
No, it was, it was all words, but it was, wasn’t clinical, scientific. It was 
 
How did they explain the groups in, in, in the information that there would be…
 
Just that, they did say that like they were testing two medications and they, again they put the names of the medications, they were in bold. And then they said the placebo and they explained what the placebo was. And it just said, “You won’t know what you’re going to be on. But if you’re still happy, sign this.” And he had to sign his own consent form. So, yes, it was a big thing for him.
 
How did they explain a placebo?
 
Just that it wasn’t medication.
 
At the age of 16 years, children can give consent to take part in a trial. Alison talks about the time her son reached 16 and was himself able to consent to take part in a trial. Some parents had considered this as something they may have to face in the future.
 

Alison's son has Cystic Fibrosis and she has given consent for him to take part in various...

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Age at interview: 49
Sex: Female
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 As he got into his teenage years, probably from the age of about 14, we started a process of transferring his sort of care so to speak for him to take some responsibility for it. And that would be sort of me withdrawing from the room if the doctor was in there, if he wanted me to. It also, we had a lengthy plan of how we actually got him to go to the hospital on his own, so I’d be training him from about 14 upwards of learning the journey up to [hospital]. Stage by stage of me withdrawing one bit further each time of, you know, well you catch the train I’ll follow you on the next one then wait for me I’ll meet you at the, it sort of, so that he, he would be ready to sort of move into taking his own, making his own decisions. And in fact at the hospital they did start, I know certainly by 16 he, we signed some forms that he could then consent to things or had to and it wasn’t just sort of me. So we did start that process very early on. And he was he wasn’t fazed by having to move from the paediatric department to the adult department. And although I always sort of said, you know, of course I will come with you if you want me to; you’ve got just this [laughter]. And but in the main he sort of dealt with things on his own except for, there was a few occasions when I maybe stepped in and said you really need to go to the hospital, you really need to ring them up, [laughter] you need to do this. Yes but in that he has assumed, he assumed responsibility, you know, quite early on. And then I realised that I had to back away from making the decisions, you know, for him, he would then have to make the decision for, you know, for himself. But what I would try and do is always strike up a conversation to say “Oh I see that, you know, you’ve been asked to do this” or “Something’s arrived in the post, oh what was that”, you know, “Can I see it or, would you like to talk about it”. And then, I’ve made sure that I’ve read up on things he’s been asked to do and gone back to him and said “You have read this properly haven’t you” and “Had you taken that into consideration”. And I always remember he turned round, and he said to me “Yes I’ve read it all I know what the risks are, I’ve read it and I’m willing to accept them”. 

 
As a parent you know, I’ve had, I’ve had to say “Okay fine good, then I support you in what you’re doing”, because he was very clear about “I’ve made my decision, still want to do it”, you know. One of the possible side effects in one of the papers was possible risk of cancer being induced by it or something. It was something like that and he was no “I’ve read it, considered it and I’m willing to accept it”. And we chose, we have no choice but to say well, you know, he’s an adult and it’s up to him.
 
But how do you feel?
 
You feel, I think it’s, it’s one of the lessons I learnt and this was the hardest lesson to learn being a parent of a CF child. And it probably applies generally, you know, anyway, is that having being so involved in his life, and helping him, you know direct his life to get the best out of things. The hardest thing to learn is actually it’s their life. It’s not my life, you know, it’s their life to live you know, as they want to. And they are responsible at the end of the day for the decisions, you know, regarding their life. And if I’m not happy with it I can, I can’t change that for him. All I can do is make sure from my point of view that I’ve helped him to make a considered decision if that’s how it’s to be so. Sometimes you feel, when you see it in black and white there’s this, this and this risk and then and actually I’ll talk a bit more about this study and the problems he did have after it. 
 

Having a good relationship with her son has helped Alison in supporting him make an informed...

Having a good relationship with her son has helped Alison in supporting him make an informed...

Age at interview: 49
Sex: Female
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 When would you stop, would there come a time when you would stop him taking part?

 
No there wouldn’t because I wouldn’t be able to stop him taking part. I could have conversations with him but we’ve built up enough of a relationship with each other and enough knowledge about each other that I wouldn’t say you cannot, you know, I forbid you to do this. Because he, he could just turn around and say well, you know, quite rightly you don’t have the right to and I wouldn’t. I would have to approach it by taking the tack of talking him through on an informed basis, are you sure because of that and then if he wanted to do it then I would have to say, you know, of course I’ll always be there for you to do it. I suppose I’d probably say I have my doubts about it but if you’re sure to do it then, you know, I’ll support you.
 
Have an open communication?
 
Yes I mean I don’t, I don’t see and I wouldn’t want to have that kind of relationship where I say, you know, you’re not doing it, yes I don’t see how I could possibly do that anyway so yes.
 
 

Supporting children and ensuring they have all the information they need will be important when...

Supporting children and ensuring they have all the information they need will be important when...

Age at interview: 39
Sex: Female
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 No, well, I don’t know. No, it’s not really come up. But I can see that it perhaps will come up. I mean just through the nature of people wanting different things and thinking, you feeling what’s best for your children and them thinking what’s best for them. So I’m sure that, yes, has a potential to be a problem. And I don’t know what you do about it. I suppose ultimately it is their choice, but you’ve got to help them come to that decision, you know, with having all the information that you can give them.

 

If Rachel’s children want to take part in a clinical trial, she will support them and ensure they...

If Rachel’s children want to take part in a clinical trial, she will support them and ensure they...

Age at interview: 35
Sex: Female
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 If they wanted to take part in something that I didn’t want them to take part in, I would have to just find out as much as I could about it. But I mean ultimately it would be their choice. But if I felt I knew something that they weren’t aware of, I think I would present the case, scientific as possible a manner, and just explain to them what I was unhappy with and perhaps explain the consequences of that to them. But ultimately it’s their choice.

The Department of Health have two booklets: Consent – what you have a right to expect; A guide for children and young people’ and ‘Consent – what you have a right to expect; A guide for parents’ - see our resources page for links to these booklets.

Last reviewed September 2018.
 
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