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Hannah - Interview 43

Age at interview: 17
Age at diagnosis: 4
Brief Outline: Hannah was invited to take part in a randomised clinical trial when attending the diabetes clinic for a routine appointment. After everything had been explained and reading the information she was given Hannah agreed to take part.
Background: Hannah is 17 years of age, is White British, goes to a local high school, and lives at home with her parents. Hannah was diagnosed with diabetes at the age of four years.

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Hannah is 17 years of age, is White British, lives at home with her parents, and attends a local high school. Hannah was diagnosed with diabetes at the age of four years. When attending the hospital diabetes clinic for a routine appointment Hannah was approached by a research nurse who asked if she would be willing to take part in a randomised controlled trial. Hannah can’t remember the exact purpose of the study but says they were comparing different ways of giving diabetes information to young people with diabetes. Her parents also had to complete a questionnaire.

Hannah had lots of information to take home and read, so she had time to make a decision and to ask any questions. Hannah signed a consent form to say she was happy to take part. Hannah was in the control group and continues to receive information in the usual way. She explains that being in control group meant that the researchers compare her questionnaire (along with the questionnaires of other young people in the control group) with the questionnaires of young people who received the new ways of having information. Hannah completed two questionnaires. Although the questionnaire was quite lengthy; approximately 30-40 pages, the questions were easy to understand with tick boxes and took about 20 minutes to complete. Questions focused on her diabetes in general, how long she had had diabetes and the types of information she had received. Although Hannah could have taken the questionnaires home to complete, she preferred to complete them while waiting for the doctor at her routine clinic appointments.

Hannah didn’t mind being in the control group and was happy to take part and help the researchers. However, she adds that it would have been nice to know what the other ways of giving information were to understand better what she was being a control for. Hannah would like to know the results of the trial and thinks it is important this is fed back to young people.
 

 

Being able to ask questions reassured Hannah why she was being asked to take part.

Being able to ask questions reassured Hannah why she was being asked to take part.

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Well, I was just visiting the clinic like for my normal check-up. So just going to see the doctors and the nurses. And one of the, I think she’s a team management leader came round and spoke to me and asked me if I was, be interested in taking part in a survey to help the university find out more about like information that was given to diabetics, like new diabetics. And because I’ve had it for a long time, it, things will have changed since then, because I’ve had it for about fourteen years. So, so they just wanted to compare like different resources that you got given to help you with like your diet. And so I was, said that I was happily to do it. And then I had to fill out some forms then, like read through the, what we had to do and then fill out the forms.
 
So they gave you some, she gave you some information?
 
Yes, a package, yes. I had an envelope with all the information in.
 
And what did it, what, was the information nice and clear for you?
 
Yes, very clear. I did have to ask a few questions just to clarify exactly what it, because I get a bit confused, but just to make sure.
 
What sort of questions were you asking?
 
Just like why do they need to like, why do they definitely need to do it?
 
And did she answer?
 
Yes.
 
What was, what was, do you understand what they were doing?
 
She made me well aware of what I was doing and that I’d be helping a lot with the university and, yes.

 

 

Giving consent to take part in a trial made Hannah feel she was being responsible for her own...

Giving consent to take part in a trial made Hannah feel she was being responsible for her own...

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I decided then because I was above 16. So they said that was fine for me to decide if I wanted to do it or not. But then it was my parents’ decision if they wanted to fill it out or not. So it wasn’t necessary that they had to fill it out.
 
So you did sign your own consent?
 
Yes
 
Did your parents didn’t have to sign to say you could take part?
 
No, they just had to sign one for them, like just to say that they were happy for them to fill it out.
 
That’s good, because you’re over 16?
 
Yes.
 
…so that makes a difference?
 
Yes.
 
Does that, is that good do you think?
 
Yes, it was, it…
 
Do you think that was…?
 
Yes.It was, yes, it was good. Like feel like you’re responsible for doing something. Don’t have to ask your parents all the time. Because I d-, I go to clinic without my parents now, so I feel like a bit more independent. Like get the bus there and sort yourself out. Because when I went with my parents they tended to speak for me a little bit. So they’d kind of answer my questions. Whereas if I go on my own I can say exactly what I feel and what I want out of everything.
 
That’s good, isn’t it? That’s important?
 
Yes, a lot better. The doctors said that that would be better because they noticed that my dad kind of butts in when I’m trying to say something [laugh]. But that’s just the way my dad is.
 
Do you think taking part as well is because you know them there?
 
I think they feel that they were more able to come up to me because they can, I’m more approachable. Because they know me very well and I’ve been there a long time and they know that I’ll help anything that they need to do. But I think they, I think they still would ask anyone, even if they were just new diabetics. I don’t think that really had much of an impact. But they were just able to talk to me more about it.
 
So you were approachable?
 
Yes.
 
But did you; did sort of knowing them and being in a familiar hospital and knowing them make it easier for to say [yes]?
 
Yes, I felt more comfortable saying like, I could say what I think in front of them and they won’t take anything the wrong way. Or if I need to ask questions, e-, no matter how stupid it is, they’ll just answer it.
 
And do you think you know, in terms of asking questions, that’s an important part before signing anything, isn’t it?
 
Yes, you need to be able to understand what you’re signing for. Because a lot of people might not read it properly or they might look at it and said they’ve read, read it and they haven’t.

 

 

Being randomised makes it a fair chance of being in either trial group. Hannah was happy to be in...

Being randomised makes it a fair chance of being in either trial group. Hannah was happy to be in...

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Just like maybe a computer system selecting just random people off a list in to the group. So it doesn’t, no one’s been selected for any reason, just they’ve been put in to that group and not really any reason for it.

And you mentioned about, that you were a control?
 
Yes.
 
What does that mean?
 
Where I don’t get any of the new information. I am just, carry on as normal, use what the dieticians have already gave me, don’t change anything that I do. Because that means I, they’ll then compare me to the experiment group where they get given new information.
 
So you you were just having…
 
Yes.
 
…the normal…?
 
I didn’t have to change anything, no.
 
And were you happy with that…
 
Yes.
 
…you were in?
 
Yes. I would have been, like interested to see what the other things was as well, because, yes, it’s been a very long time since I was given all my sheets and, explaining like all my diabetic…Because it would be nice to know again what like I need to go over, because I was only like 4 when I was diagnosed. So I obviously wasn’t the one reading through all the information packages. It would have been my mum and dad.

 

 

Hannah would often discuss things in the questionnaire with her parents; and sometimes they...

Hannah would often discuss things in the questionnaire with her parents; and sometimes they...

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And you filled in two?
 
Yes. And my parents have filled in; I think my parents only filled in one. Because I didn’t go to the clinic with my mum, so I brought one home and she forgot to fill it out. So they sent me another one in the post and then she sent that one off. It was just asking about like my health and like what involvement she has.
 
And, and did you compare notes, you and your mum?
 
I was, I was interested in what she was putting. But, no, because I’d already sent mine off. So…
 
Did you have a look at what your mum put?
 
Yes.
 
Did you agree with her?
 
Yes, pretty much.
 
So you were okay with that?
 
Yes.
 
So you kind of discussed it a little bit?
 
Yes. Because there was a few questions about my health and mum brought up the topic but, and she says that maybe I’m not controlling it as well as I could be.
 
Is that true?
 
It’s all right. I’ve got a lot better now. It’s just my laziness.
 
Is that because you have to do regular injections?
 
Yes, well, every time I eat I have to inject. It is hard when you’re at sixth form and college and stuff, just remembering. I never forget my insulin but it’s just whether I do it a bit later. And I’ve got to regularly check my blood sugars.
 
So it’s remembering to do the things you have to do? But the, taking part in the clinical trial didn’t take up much time?
 
No, no.
 
It didn’t interfere with –
 
It didn’t interfere with anything, no.
 
Because you did it at the clinic.
 
It’s quite nice to be a help really. Because not many people do like, do things like that really any more.

 

 

Taking part in the trial was a ‘wake-up’ call for Hannah, and a realisation of how little she...

Taking part in the trial was a ‘wake-up’ call for Hannah, and a realisation of how little she...

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So it helped you personally?
 
It kind of gave me a wake-up call on how I need to sort some things out, like I need to be, need to do a lot more blood sugars and s-, things like that. It does make you realise.
 
I mean it would be nice for you to talk more about that, how it did help you?
 
It helped me because it sort of, you can put your finger on what exactly you feel like is going wrong with your diabetes or, or how you think you could improve how you treat your diabetes. And also it makes me realise how little I feel like I knew about it. If someone asked me, “What exactly is diabetes?” I probably wouldn’t be able to tell them exactly, but I’ve got a rough idea.
 
So that, has that helped you sort of clarify lots of things in your own mind?
 
Yes, because I have been asking the doctors a lot more questions about, “Why do I need to do that?” or “Why do I need to do this?” Just so that I know, rather than my parents.
 
And has that been through, because of completing the survey?
 
I would say that had a, a little impact, yes. It made me feel like, “Yes, I need to do something about it.”
 
So it made you more inquisitive? 
 
Yes.
 
So you understand you, how it affects you?
 
Yes.
 
Because I think one of the people I spoke to as well said that it, they hadn’t realised that it can affect people in different ways.
 
Yes.
 
And is that how you, did you understand that before or is that something you’ve recently…?
 
What, diabetes in different ways?
 
Yes.
 
Yes.
 
Because obviously I can see it from two different ways, because my cousins have got it as well. So they get affected by different things, whereas I maybe don’t, because they’re smaller than me and I’ve got a bigger build. So maybe just different insulin affects people, and different activities.

 

 

Hannah would like to have had more opportunities during the trial for group sessions with...

Hannah would like to have had more opportunities during the trial for group sessions with...

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I would say maybe like a course of some sort. Just, maybe just a few one-hour sessions just to like make my understanding of diabetes a lot greater than it is. So maybe just a few, not necessarily so formal, maybe a bit more relaxed like a, just like everybody talking about it, and, and a doctor or a nurse or someone just explaining how insulin works or how your body works or reacts to it or… just something so you get a bit more of a understanding. 

 

Hannah would consider taking part in another trial. She feels there is little known about...

Hannah would consider taking part in another trial. She feels there is little known about...

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If the trial had been something more different, about changing perhaps your treatment, would you?
 
I’d probably be more interested in that.
 
You’d be more interested?
 
Yes.
 
You’d be still keen to take part in something that was more treatment based?
 
I definitely think, yes, I think that if they’ve got any like new treatments coming out then I’d be interested to find out more about them and anything like that.
 
Would it, would it depend perhaps on the side effects and things like that?
 
Yes, you would need to know, yes. Side effects would be a thing to consider.
 
Perhaps you might discuss it with your parents?
 
Yes, that’s more what I’d discuss with my parents.
 
But you’d still be keen to take part?
 
Yes. 
 
I think that’s an important…
 
Yes.
…message to get across really, that, you know, young people do want to take part.
 
Yes, I think anything to do with diabetes, I’m happy to do anything. There isn’t a lot of people that know exactly about it. I know you can learn, you have to learn about it in like some biology lessons, but you don’t go in to great detail about how it affects people.

 

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