Sophie - Interview 44

Age at interview: 12

Age at diagnosis: 3

Brief Outline: Sophie took part in a randomised controlled trial to assess the value of an intervention for use by diabetes clinicians to help young people self-manage their diabetes and other long term health conditions. Sophie enjoyed taking part in the trial and would consider other similar trials in the future.

Background: Sophie aged 12 is White British and lives at home with her parents and siblings. She attends a local school and enjoys Art and cleaning her bedroom. Sophie was diagnosed with Type I diabetes at the age of 3 years.

More about me...

Sophie aged 12 is White British and lives at home with her parents and siblings. She attends a local school and enjoys Art and cleaning her bedroom. Sophie was diagnosed with Type I diabetes at the age of 3 years. Sophie aged 12, lives with her parents and siblings at home. She attends a local school and enjoys Art and cleaning her bedroom. Sophie was diagnosed with Type I diabetes at the age of 3 years. Type I diabetes is the third most common chronic disease. Recently Sophie took part in a randomised controlled trial to assess the value of an intervention led by diabetes clinicians to help young people self-manage their diabetes and other long term health conditions.

Sophie talks about her experience and how much she enjoyed taking part. She doesn’t remember receiving any information because her parents had all the information and is unsure about the name of the trial or how long the trial is for. She thinks they were trying to understand about how young people feel about their condition. Sophie remembers attending the hospital for one day with other young people aged 11 to 18 years who had diabetes and some had other conditions such as attention and hyperactive disorder and epilepsy. Sometimes they worked together as a group and sometimes they were split into smaller groups depending on the condition they had.

She says she learned about diabetes and different foods, how to control blood sugar levels, hygiene and safety in medicines. Sophie also had to complete a questionnaire. She says this was ‘dead easy’ to complete and mainly involved tick boxes. The questions included things such as how you feel about having diabetes and is there anything that you don’t understand about diabetes. There were lots of games and activities too. Sophie enjoyed being with similar others and would like to do something similar again.

Sophie is unsure what happens next or when the trial ends.

 

Sophie (aged 12) was randomised to take part in a one day trial to develop an intervention for...

I’m not sure like who approached me. But we had to, like we had to group together with a load of other people with diabetes. And I think it was the diabetes nurse that showed us round. When, when, like we had to like fill like loads of like, like questionnaires, fill them in and like tell her things about diabetes and what you like about it and what you don’t like. And like for like dinner we had like, when it came to dinner we had like fruit, like passion fruit and loads of different ones. And I think there were sandwiches there and loads of very healthy food.

 

They like said like how you could like keep your diet up, if you see what I mean. Like how you could like keep control of your blood glucose levels. And like when, like when, what, what to do, like how to stop you like going into hypos and hypers with your diabetes and that.

 

To like, I think it was like to, like you, like to us to understand like what the bad things are about stress and what the good things are. And then like the bad things about like what do we feel about it. And then the good things about it.

 

And what was the questionnaire that you filled in? What was that about?

 

It was like about like how do we feel about our condition. How old we are. And like the contact numbers and signatures and all that. And like as you go through it we had to like tick like things about like, how do we feel about something like our diabetes for instance. And like, there was like three columns. Okay with it, good, very good. And that’s it, like there were circles and we had to tick each one.

What, what sort of questions did you have about that?

 

Like were we nervous like coming to the thing to fill in like a load of things, things what, like nervous when we were coming because we’d never met other children before like us? And like are, are we like, are you stressed or confused about like anything about like your condition?

 

And is that things that they asked you? Was that on the questionnaire, was it? And how did you respond to those things?

 

I said sometimes confused with it because like there’s a lot to it. Like you’ve got to like take your blood sugars if you, and like you’ve got to work out whether you’re low, you’re high or you’re fine.

 

Sophie says being in a trial is fun and has taught her more about the condition.

So why do you think you, you, taking part in a trial, what would be your key reason for taking part? What would be your motivation?

Because it was, it was like not like school. It was like fun in a way. And it like, it taught like us like what, what to learn, what to do with our condition.
 

Attending a one day group intervention was a great experience for Sophie. She enjoyed being with...

So were there any different age groups?

 

There were, I know there was me, I was in the 11. There was, I think we were 11 to 16, 18.

 

And were there many in the group?

 

I think there was like eight of us. Something like that.

 

Did you; did you like being in a group like that? Would you have liked it to have been more one-to-one?

 

No, I think it was quite, quite amusing.

 

In what way?

 

Like everyone would be, when like, it wouldn’t be like when, when you take your, when you take your needles well, needles, when, when, when you take, well, I went on a pump then, because I’ve got a pump. When like everyone took their needles it would be all together instead of like you’re doing it on your own, not like in school.

 

There was like loads of like, like other people there like what, like I said, like it varied between like ten or fifteen of us. And like they used, they, they, they had this big board. What we like, we had to like, jotted down things. So like, like how to like get, like calm yourself down when you get stressed. And then we went on to like how, how do we feel like being in school with our diabetes and everything. Oh, it weren’t just diabetes; it was asthma and…

 

So there, were there children, did all the children have diabetes?

 

Not all of us, not all of us. There was asthma,Did they split you into little groups?

 

Yes, there was groups of three.

 

Oh, I see. And did you all have to sit round together in a, in a group with a, was there a nurse for each group?

 

Like a, a, not so much a teacher but like this person with some, that condition itself. Because there was a teacher with diabetes, there was a t-, teacher with asthma and there was a, there was a teacher with epilepsy and there was a teacher with… ADHD. And they all took us off like into separate groups.

 

And were you all in the same room?

 

Yes, just different parts of the room, yes.

 

Was it a big room?

 

Yes.

 

Good job, wasn’t it? Lot of chatter. That’s a good way of doing it.

<

Meeting other young people with diabetes and sharing experiences was really beneficial to Sophie....

And what was the questionnaire that you filled in? What was that about?

 

It was like about like how do we feel about our condition. How old we are. And like the contact numbers and signatures and all that. And like as you go through it we had to like tick like things about like s-, how do we feel about something like our diabetes for instance. And like, there was like, three columns. Okay with it, good, very good. And that’s it, like there were circles and we had to tick each one.

 

And did you find that easy to complete? There weren’t, were there any questions that you had about that, filling in that questionnaire?

 

Yes.

 

What sort of questions did you have about that?

 

Like were we nervous like coming to the thing to fill in like a load of things, things what, like nervous when we were coming because we’d never met other children before like us? And like are, are we, like are you stressed or confused about like anything about like your condition?

 

And is that things that they asked you? Was that on the questionnaire, was it? And how did you respond to those things?

 

I said sometimes confused with it because like there’s a lot to it. Like you’ve got to like take your blood sugars if you, and like you’ve got to work out whether you’re low, you’re high or you’re fine.

 

Were there other questions at all?

 

There was like things about like how do we cope with like little brothers and sisters wandering around and getting hold of things? I said that we have it all stored in a, because I, we, I have it stored in the kitchen. Because we’ve got like high cupboards off the, on to the, like the ceiling we keep them in, so my little sister and brother can’t get them.

 

So there was advice about safety and, and hygiene, things like that?

 

And then like there was a big board, like a stand-up, there was like a stand-up board like round about that big. And there was like paper on it, and like every time we said something they’d write it down and see like, how we, like is it positive or n-, negative things. And then we did like, we did a game and then we did, went, went back and d-, done some more like, questions, like things on the board. And then we went back and xx another game, had lunch, then we played a big game at the end.

 

So it was busy then? And they had a flip chart? What did they do with all that information on the, on the flip chart?

 

Well, they put, put it in to columns and like positive, negative or is it strong or weak. Weak as in like is it like not too good, and strong if it’s really good.

 

So what were the, what were the strong things? What sort of responses were those?

 

Like if you have stress, like they can keep you awake through the day, making sure like you don’t fall asleep. And then like the strong, another strong thing was like they can, they can remind you of things like in the past of what you did. And then like the weak, weak things, like it, it can keep you awake most of the night and you don’t get any sleep and then you, if it goes the next day you’ll be asleep in school or college or university. Because there was a group as well there which was in their 15 and 16s who have just left school, so they’re on, like just doing GCSEs at college and uni. So they was from there. And like another strong thi

Sophie feels that keeping children and young people engaged throughout the day is important when...

And if you could change anything to improve your experience taking part in the trial, is there anything that you would do to improve it? Or that they could do to improve it for other children in the future?

 

In the future I suppose they could like, like they could, I suppose they could like, like make it clearer, if you know what I mean?

 

Clearer? Which bit to make clearer?

 

Like, like they’d start, but then as they got like towards the end the words would like start going deeper. So they, they‘d, they’d speak, speak like that [expresses high tone] but then they’d go like this [expresses low tone].

 

Perhaps they were getting tired, do you think? So it wasn’t so much the words, it was how they expressed.

 

Yes.

 

And their, perhaps their tone began to slow? Did they lose that sort of fun element a little bit as the day wore on?

 

Not really.

 

No? That kept going?

 

They were really funny. Because like it weren’t just us taking part, it was them as well. So like they joined in as in, so like it weren’t just like a school thing. It was together.