Georgia – Interview 63

Georgia was invited to take part in a research study when she was about five or six years of age, she can’t quite remember when. Because her mum and dad said it would be okay and they discussed it with her, she agreed to take part.

Georgia, aged 10, is White British and lives with her mum and siblings at home. She attends a local school and is a member of the school athletics team. She also loves dancing, swimming and going to Brownies.

When Georgia was 18 months, she was diagnosed with arthritis and when she was five or six years of age she was invited to take part in a research study on helping to improve understanding of arthritis in children and young people. Because her mum and dad said it was okay for her to take part and after discussing it with Georgia, she agreed it would be a good thing to do.

She wanted to take part to let researchers and doctors know what it is like to live with arthritis, she says it is important that they know what it is like for young people. She also wanted to help other children who may be diagnosed with arthritis in the future. The trial involves completing a questionnaire once a year at the hospital, and answering questions about her arthritis and how it affects her daily activities including washing and dressing.

She would like to take part in similar trials in the future. She would also consider trials that involved a change to her treatment, but she would have to discuss it first with her parents and would have to have plenty of information about the trial and what it involved before making a decision.

If she had the option, Georgia would prefer a voucher as a thank you for taking part in research, but telling the researchers about her arthritis was more important.

Age at interview 10

Gender Female

Do you think that’s important that young people have a reward at the end?

Well I think they, I don’t think it’s important but I think they should for taking part, so.

Do you think it should be money or a voucher?

A voucher.But maybe just have like £10 voucher, could have like £15 in a voucher for somewhere, WH Smith or something.

Do you think it would have made a difference if you had known there was a payment, whether you took part or not?

Yes.

In what way?

Well if told me, I’d be like woo hoo I’d get a reward for taking part in a clinical trial.

Would it have encouraged you do you think?

A bit, a bit more but probably most yes. Yes. I don’t, I weren’t just taking part if they told me at first about the payment I wouldn’t just take part because of the payment I’d take part because I wanted to tell them about my arthritis.

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Georgina feels that younger children would like to have information at their level and more…

Age at interview 10

Gender Female

Is there a better
way then to sort of inform you about clinical trials do you think?

Well I think they could give me a bit more information about the
clinical trial.

You think so?

Yes.

You’d like a bit more, something a bit easier to
read?

Yes, and like more information because they only gave me a little
bit of information, so I would quite like more so like, I didn’t quite really
understand it.

What sort of
information would you like, can you explain that?

Like well the information they asked me is like are you okay doing
this and that like I’d like to have more information about like well we’re
going, these are what you should do and these are what you shouldn’t do. Should
I need that.

Right. So with
your arthritis you’d like to know more about what you can do?

Yes because I’ve got it everywhere in my joints in my body, well
they only sometimes like check me, they check my like ankles and my wrists and
stuff they check. But it’s just I’d like them to inform me that I’ve got
something in my wrists because they just say well you’ve got, like they don’t
tell me why I’ve got it. And I know I’ve got it because of me arthritis but I
mean why it’s happened.

Okay so you want
to know more about why you’ve got it?

Yes, and what happened like when I’ve moved or something, it’s
went and I’d like to know that.

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It is important health professionals understand what it is like to have arthritis as a young…

Age at interview 10

Gender Female

Why did you agree
to take part do you think?

Because I thought it would be kind of like good to explain, you
know arthritis, what it’s like and that, then they’d understand like what
arthritis is like if I told them properly.

So do you think
it’s important they understand what it’s like for you?

Yes. Well I don’t think it’s like important but I think that it’s
quite, they should know what it’s like to have arthritis.

Because you said
sometimes you want to ask how I got this and this is why it’s happened, do you
think there should be more questions?

Yes because they don’t say like when you write stories or draw,
because most children I know who have got arthritis when they’ve wrote their
wrist starts to ache but they, I always sometimes, I can’t sometimes tell them
that it hurts when I sit down for two long in my thighs and my wrists when I
write for too long.

That’s good, and
if you were to give a message to other, to health professionals about your taking
part in a clinical trial what would you say to them, you
know, based on your experience now, what do they need to know that you think
people should be aware of?

Well I think they should know that, because they don’t understand
how like sometimes painful it is to have arthritis or I think you could like
explain to them what it really is like and how painful it is and then they
could probably go off and tell children that I spoke to some people and they
said how painful it was, is yours painful?

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Helping other children with arthritis was a key reason for Georgia to take part in a research study.

Age at interview 10

Gender Female

Well I’d say
I’ve got like I told them that I’ve got arthritis and they go what’s that and I
go well that’s where you’ve got pains in your body and like I’ve got it in all
my joints. That’s when. and I told them I was in a clinical trial after I got
told and they went what’s that and I went well it’s like when you’re part of
like a programme and you get asked questions and sometimes you get interviewed
and people talk to you and ask you, give you sheets to fill in.

And did it make you feel good to take part?

Yes. Because
then I could tell people like what it’s like to have arthritis and I’ve got
arthritis.

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Georgia is unsure about doing future trials or research if it involved having injections or drugs. She would have to get her parents’ permission and have plenty of information.

Age at interview 10

Gender Female

What sort of trials would you take part in?

Well I’d take part in these ones because I already, I am now.

Yes.

But I’m not really sure what kind of trials.

If it was changing your treatment like if they wanted to try out a new drug.

Yes I’d probably take part in that but they’d need my parents’ permission.

Yes. What trials perhaps wouldn’t you take part in do you know, what wouldn’t you do?

I’m not sure but if they didn’t give me really much information about it I wouldn’t take part in it. Because I really wouldn’t know what it was about?

So you want to make sure you’ve got lots of information?

Yes.

And about what the clinical trial is?

Yes.

We need to get that across don’t we? You want to know that.

Yes.

So anything that perhaps if it was needles something like that it might put you off?

That would put me off actually, when you think about it, well when I think about it would put me off.

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Answering questions on her arthritis is easy, says Georgia.

Age at interview 10

Gender Female

Do you have to complete anything on your own?

No like my
Nan and my dad and my m takes me but when I’m completing it sometimes I don’t
get it and they like tell me what it means and then I write it in the answer.
And when I get checked on by the doctor just sometimes assistants like doctors
who are like learning about arthritis, and they sit as well.

Ah right. So you do it at the hospital when you’re
there?

Yes.

You go in a room or something?

Yes.

Yes so it’s nice and quiet for you?

Yes.

Yes, does it take long to do?

No it’s about
like ten minutes or something. When they do for the whole thing but the
questions takes about three minutes.

Really.

Yes.

What sort of questions are there?

Like, it’s
kind of questions that like do you, can you, like they say are you stable
brushing your teeth and do you need a wheel chair, can you sit on the toilet
and stuff like stuff that can affect me with my arthritis.

So just making sure about your movement and what
you can do?

Yes.

Yes, so it’s, are they more like tick boxes?

Yes.

Yes, do you have to do any writing; are there any
questions that you have to write for?

No.

So is it easy?

Yes, easy
peasey.

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