Saskia - Interview 30

Age at interview: 13

Age at diagnosis: 11

Brief Outline: Saskia was asked to take part in a clinical trial that involved the completion of a questionnaire at each routine clinic visit. Saskia wanted to take part to help other people with diabetes.

Background: Saskia is aged 13, goes to school and lives with her parents. Saskia was diagnosed with diabetes at the age of 11 years.

More about me...

Saskia is aged 13, lives with her parents and goes to a local high school. Saskia was invited to take part in a clinical trial that involved completing a questionnaire at three routine clinic visits.

After agreeing to take part, Saskia completed a questionnaire and was then given an information pack to take home. The information pack included lots of different information about diabetes. Every three months at a routine clinic visit Saskia completed a questionnaire. The questionnaire was easy to understand and took about 20 to 30 minutes to complete. The questionnaire was very similar each time. Saskia wanted to take part to help other people with diabetes. She enjoyed taking part and says'

“It was good, yes. It was good because like you knew that you were going to help someone and help them with their diabetes.”

Saskia also says that it is good that young people take part in clinical trials as other children will be helped.

On completion of each questionnaire, Saskia received an unexpected £5 gift voucher. Her view on payment for taking part in clinical trials is that if you get a reward you might feel like doing more trials in the future.

 

Saskia received information about a trial at a routine clinic appointment, and because it was...

I went to a, when I went to one of my diabetic clinic routine check-up things, they asked me if I wanted to take part in it. And my mum said, “Yes, to help other people.”

 

And were you happy with that, mum saying, “Yes”?

 

Yes, it was all right, yes. It was good.

 

And who was it that actually asked you if you wanted to take part? Do you remember? Was it one of the nurses?

 

It was one of the nurses, yes.

 

And she explained everything to you? Did you understand everything when she was explaining?

 

Yes, I found it quite simple, just basically you just put a cross in each box.

 

And do you understand what, what it was about, what the clinical trial was about?

 

It was probably to help other children with diabetes, to help them if they were struggling a bit or something.

 

So in what way do you think it was helping them? Do you know?

 

Well, by filling in the booklet, these people can like do research in it and see if they can help them by doing their, by their research, and then people filling in booklets.

 

And was there anything that you didn’t understand at all?

 

Not really, no. I found it all pretty easy to understand. It was all quite easy, yes.

 

And did you feel there, there were, did you ask any questions at all? Did you want to ask?

 

I didn’t feel like I needed to ask any questions because I didn’t feel they were necessary to ask.

 

Completing the questionnaire at the clinic was easy to do and didn't take very long.

What do you think you were filling the forms in for?

 

Well, probably, I was there probably to help other children who have got diabetes, to help them probably get through it.

 

And what was, what were the forms about?

 

Probably like it’s just everyday questions like, “Can you get up? Can you get dressed? Do, do you find it hard to do exercise? Do people understand your diabetes?” All different questions relating to life.

 

And were they easy questions for you to, to fill in?

 

Yes, very easy.

 

Were they? Was there many?

 

Yes, there was a lot.

 

So how long, how long did it take?

 

About 20 minutes, maybe half an hour.

 

And how many times did you have to fill in the questionnaire?

 

Two or three times.

 

And each time was it the same?

 

Each time it was, it was slightly modified in, in different ways. I think maybe added a few more questions on might have answered a few more questions.

 

Can you remember what the questions were?

 

Some questions were like, it was all put in different, I think it was put into three or four sections about like, “Can you, do you find it hard to wash yourself?” or, “Do you find it hard to get up, brush your teeth?”, and do all that, or, stuff. Or, and other parts were like, “Do you friends understand diabetes? Do you find it difficult to do exercise at school to do your homework?” and stuff, stuff like that. Which I found, I found really easy.

 

Receiving vouchers at the end of a trial wasn't the reason Saskia took part, but she says if you...

Did they mention about any payment at all? Did you get any payment? They pay you for taking part sometimes?

 

Every time I did the paper I got a £5 Love2Shop voucher.

 

Oh, did you? So that was every time?

 

Every time you did, filled in the paper.

 

So you had three lots?

 

Yes.

 

It was three times you filled in the questionnaire?

 

Yes.

 

So you got three payments? Was that sort of a bonus? Was that sort of nice to have?

 

Yes.

 

Do you think you should have had, you know, do you think it’s important that you have a sort of reward at the end?

 

I don’t know. I’m not sure it would make any difference really. But it might, it might make a difference because it might be able to, like if you, if you get the reward, you might feel better about it or you might feel like you want to carry on doing future clinical trials. But I’m not sure really, yeah.

 

It’s just some people, you know, it’s whether you feel, as a young person you feel it’s something that you ought to have, or it should be mentioned that you’ll get paid, or whether it should come at the end like that as an unexpected reward?I mean does it make a difference to you?

 

Well, if you know that, either way it’s good. Because if you know that you’re going to get paid a £5 reward when you’ve done the paper, it’s good because like you might know that you’ve, when you’ve filled in the paper you’ll get a reward, so you’ve done something good to fill in the paper. Or if it’s unexpected then it’s also good because like, but it’s also bad because like if it’s, if you get it at the end you might not have tried your hardest because you weren’t sure that you were going to get a reward at the end of it. But if you knew, if you didn’t know that you were going to get a reward at the end of it, then you might like feel proud that you’ve done it because you’ve got a reward for doing it.