But you were at you were at school at the time?

I think I was in primary school when I took them.

In primary school. And why did you decide not to take them anymore?

Because I, I was going to High School and that like I was fed up taking them.

So you were fed up taking them. Do you think they’ve helped you?

Yeah a little bit, but when I, when I used to take them, they, they, they, I was like, they stopped me growing, but they didn’t. But that’s, I feel like I’m growing better than when I took them.

You feel like you’re growing better without them?

Yeah.

So you’re not sure that they’ve quite helped you, or, do you think that was just…?

They were alight but I prefer it when I didn’t take them.

Why is that?

Because, I don’t know.

It makes you feel better not having to take injections does it? Or,

Yeah.

And did you, when you say your friends and that… Did you talk to your friends about what you were doing and…?

Not from the start when they had to like, showed me, I told them like when I was like in primary school, and they kept telling people, and I was like, Oh, don’t tell people

And that put you off a bit did it? How did it make you feel that they were telling other people?

Really angry.

Did it? And what did you do with your anger?

Just calmed down.

Is there anything that you’d like to say about your own experience? If you could sum up all your experience, how would you say it’s been? Just going to the hospital for tests and having injections?

Courtney’ I hated going to hospital.

Did you?

Courtney’ Because the needle and all that.

Was that the only thing, it was just the needles? That’s the main thing that you didn’t like and, and that made it quite hard for you. If it had been another way or having the growth hormones, if it had been in liquid form, or…?

Courtney’ Yeah, it would be, it would be actually better if it was liquid.

Would it – you would prefer that?

Courtney’ Instead of a needle.

And would you, if, if it had been in another form than a needle for you, do you think you may have stayed, continued taking them?

Courtney’ Yeah.

So it’s really a thing about needles isn’t it? Like you didn’t like having the blood tests? Are there any other tests that you didn’t like or you had to have?

Courtney’ No.

it’s just those.

Courtney’ it’s just the needle.

it’s just the needle.

Mum’ Carrying all the back up.

Courtney’ And I hated going, I hated, I hated to go to the hospital.

Did you? Why is that?

Courtney’ Because it’s a long journey, plus the needles and all that stuff.

Mum’ But they looked after us.

Yeah.

Courtney’ Yeah.

They were nice when you were there. But it was just the, was it a long journey because you didn’t want to go? You know, was it the thought of having needles and it worried you. Did it worry you at all?

Courtney’ Yeah.

Did you get upset?

Mum’ I think that’s why she, well she got herself all worked up, and then obviously having this faint.

And I mean did they mention about withdrawing, that you could withdraw?

They say you can withdraw, but it’s very hard to because they don’t want to let you out really.

Sometimes they will give you really good points for not coming out of it, Okay, well, do you really want to come out of it while your exams are going on? Because you’ll have to look for more medication. But sometimes it’s just, no, you don’t want it. Okay, is there any reason? No. Okay. So you just kind of sit there and kind of work out well what’s your best opinion.

So it gives that option, but they’re not keen on you.

Yes, well, I think that’s just kind of they put so much time and effort and money in to you, they don’t want to lose a good resource.

And have you thought about withdrawing?

I’ve thought about it a few times, just due to kind of getting annoyed or frustrated with some of the like side effects like the sleep withdrawal or the kind of skin or any of those kind of things. You just kind of think, I’m sick and tired of this now. I just want to be normal. I can’t be arsed with chest infections or any of that kind of stuff anymore. But then you think about it properly and go, Well, what happens if I do come off it? Am I going to get really bad or even worse than I was? Or what happens?

If you want to come out of a drug trial you really really have to think about it. It’s not just kind of one of those split-second things, thoughts about it. So, I don’t know.

Have you ever thought
about withdrawing at all or stopping when it got complicated or –

Yes. Yes, I’ve said to
my mum, I think I should justrdquo; Because I missed, when I missed them I
thought, it’s just going to affect the trial, and I don’t want to ruin it in
case it does come out that I have got the actual, real drug, medication But
she was just like, Well, I’ll help you remember Because she wants it to keep
an eye on me with my bones and everything as well as that.

Is that, is that your
mum wanted you to stay in?

Yes.

And I know you said
taking part, going back to that, just sort of the reasons, this, this interest
in, do you think by taking part they will keep a, more of an eye on you?

Yes, they have done.
They even said that, Being in this trial, we’ll keep an eye on you more And
some of the doctors said they will keep an eye on you more. Because they’re
going to be examining my bones. And I wouldn’t know, with this medication I
wouldn’t know if I had a silent fracture and the doctors wouldn’t know. So it just,
that was one of the reasons. And some of the side effects, there’s like muscle
weakness and that, so they could probably just help with stuff like that.

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 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 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 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.

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.