Joe - Interview 46

Age at interview: 15

Age at diagnosis: 15

Brief Outline: Joe was invited to take part in a randomised controlled trial soon after he was diagnosed with diabetes, one year ago. The aim of the trial was to assess hospital versus home management at diagnosis in childhood diabetes. Joe was happy to take part.

Background: Joe aged 15 is White British and lives at home with his parents and siblings. Joe attends a local school and enjoys football and going out with friends. He was diagnosed with diabetes one year ago.

More about me...

Joe aged 15 is White British and lives at home with his parents and siblings. Joe attends a local school and enjoys football and going out with friends. He was diagnosed with diabetes one year ago. At the time of diagnosis Joe was invited to take part in a randomised controlled trial to assess hospital versus home management of diagnosis in childhood diabetes. Although he was happy to take part, it was a bit of a shock, and at the time he felt overwhelmed and upset to know he had diabetes. However he says at the time he just thought “Well, it’s like, it’s a speed bump and not a stop sign. So it’s not going to stop me.”

He was very happy to take part in the trial because it would help him understand about diabetes and how to deal with it and help other people in the future. He remembers receiving lots of information and everyone being very helpful at the time. He had time to make a decision and had a form to sign and his parents had to sign a consent form too. The only question Joe had was about insulin injections and how diabetes would affect playing sport. However, he was pleased to hear that sport is good for people with diabetes. He’s now got used to having injections.

Joe explains that a computer randomly allocated people to receive either the hospital or the home management programme. He was pleased to be allocated to the hospital programme because it was all quite a shock and being in the hospital meant he could ask questions and knew he would be cared for. However, he says he could go home for meals and be with his family so that was good too. He stayed in hospital for three days, although he recalls that if people weren’t coping very well they could stay in for longer.

During his stay in hospital he learned about insulin, when and how to take it, foods and carbohydrate counting, and all things related to managing diabetes. Joe is still in the trial and now has 3-monthly clinic appointments when the nurse asks if he has had any time off school or been to see a doctor, and other questions related to managing diabetes at home. He doesn’t know when the trial will finish or when the results will be published.

In terms of improving his experience, Joe feels that the information on diabetes could be worded and explained simpler. Some medical terms in relation to diabetes, such as insulin, were difficult to understand, particularly when you are new to diabetes.

Joe would be happy to take part in future trials as long as it was safe and he could still go out with his friends and do sport.
 

Joe feels it is reassuring to know that people are interested to research diabetes because it...

Joe' I think I, my experience was, well, I mean it’s not, never good, being told you’ve got something like that. But I think everyone was really nice to me and helpful and really helped. But the one thing I would say is just carry on with this research that everyone’s doing, because it makes everyone feel reassured that there’s people helping them and looking into stuff.

 

Mum' For the future.

 

Joe' Yes, just for other people, to help them deal with it and stuff.

That’s a really good answer.

 

Mum' We couldn’t have had, had it any better…

 

Joe' Yes.

 

Mum' ...in the situation.

 

Joe' I think the research is really good, what they’re doing.

 

So it’s quite a key thing then really?

 

Mum' Yes.

 

Joe' Yes.

 

It’s not the most thing, but it’s certainly helped enhance your experience?

 

And I’d like to say that I’m very grateful to them people who are just doing this research, because it’s, I think it’s better for everyone really.

 

Having a diagnosis of diabetes came as a shock to Joe and his family; taking part in a trial...

Yes, I’d say to them, “Definitely take part.” Just, I’d say, “Even if you do, even if you just think, ‘Oh, no, that’s nothing to do with me.’” It’s like I’d say, “Even it, it helps, it helps every, everyone trying to get over it and get used to it.”

 

Because everyone who gets diagnosed and didn’t know, it’s a big big shock to them, and just a different, change of lifestyle. And taking part in research, it’s not only helping themselves, it’s helping everyone to deal with it. Y

 

Mum' It’s very positive, isn’t it?

 

Yes, it just, yes, it gets you through it and makes you think, “At least I’m helping other people as well.” So, yes, I think it’s, I think the research is brilliant.

Yes, I was going to say something. Yes, I think I was going to say, yes, to, to people who’ve got it or got any long-term illness, I would say, “As soon as you get it, you, you, you, you have the thought like, ‘Oh’ like, ‘Oh, I can’t, like, you know, I can’t be bothered’ and, ‘Why is it happening to me?’ But like, you know, it’s just, just the way things go.” And I’d just say, “Just carry on and fight through it, because it’s not the end of the world.” Which, you’ve got to be a strong-minded person. If you‘re, the more strong-minded you are the easier it is to get through it. That’s all.

 

Joe took part in a trial to assess home versus hospital management at diagnosis of childhood...

Well, they explained what they were going to do in the trial. They explained like about diabetes. And they said, “The trial is just to see how you cope with like, with diabetes.” And in hospital I think it was better because if I needed any, if I had any questions I could have asked them and stuff. But I think if it, if I had the trial at home I would have been able to like, you know, deal with it on my own more, instead of like asking people.

So was there a choice?

No. The organisers, they choose for you.

They choose for you? So you could you have gone home at all?

could have gone home. But I think it’s like they randomly choose people to stay in hospital or go home. And I was chosen to stay in hospital.

I was going to say, I was wondering whether you were randomised. And did they mention about the, explain about the, that grouping in those groups to you? Why they were having those?

Yes, they said, they mentioned that they wanted to see how people dealt with it in different like situations. Like when I was in hospital, if like, you know, at home, to see how people coped with it more. If you got put in hospital it was just for the doctors to help you really and stuff.

And how did that feel, you know, when you were, you sort of, you were diagnosed and then you were, then you were asked to go in to a trial? How did you feel at that time? Because it must have been a bit overwhelming?

Yes, I was really overwhelmed, I was shocked. And my mum was shocked as well. And it was it was upsetting when I first found that out I had diabetes. But then I thought, “Well, it’s like, it’s a speed bump and not a stop sign. So it’s not going to stop me.” But then the trial, I just, I felt happy to be in the trial because it’s to help me and to help other people, research and stuff. So, yes, I was happy I got put in hospital though, because I was a bit shocked at the time.

And, like you say, one of the reasons you wanted to take part was to help yourself. In what way do you think it was going to help you and help research?

I think it would just help me to understand diabetes and like how to deal with it more, because I was really shocked when I found out. And it did, the research is, because I’ve been through the, you know, the shock of having diabetes, and when other people get diagnosed it’s just like unexpected and stuff. And the research will help people deal with it I think.
 

When you are newly diagnosed with diabetes says Joe, being invited to take part in a trial can be...

And how did that feel, you know, when you were diagnosed and then you were asked to go in to a trial? How did you feel at that time, because it must have been a bit overwhelming?

 

Yes, I was really overwhelmed, I was shocked. And my mum was shocked as well. And it was it was upsetting when I first found that out I had diabetes. But then I thought, “Well, it’s like, it’s a speed bump and not a stop sign. So it’s not going to stop me.” But then the trial, I just, I felt happy to be in the trial because it’s to help me and to help other people, research and stuff. So, yes, I was happy I got put in hospital though, because I was a bit shocked at the time.

 

And did you, what sort of questions did you have at the time?

 

I was really interested in like needles. And I was, because I love sport, sport’s a big part of my life, and I was worried in case I wouldn’t be able to play football and stuff anymore. So I was really interested in what I can do. And then I found out that the best thing to do is do sport, because it’s the best for you. It helps and stuff. But I was just; I was just worried about like, because I worry a lot, so I was worried about injections and stuff. I used to be scared of them. But then as soon as you have, like as soon as you go for the first like injections in the hospital, even if you are like really scared of needles, you just, you know, you get used to it. Because you’ve got to have it and… But, yes, but I was, I was worried about what would happen if, like just to me. And they explained that like if I take good care of myself I’ll be all right and stuff and nothing will happen. So that was good.

 

Joe says that trial information needs to be more ‘child friendly' when explaining medical terms...

Could that have been improved in any way?

 

Joe' I think sometimes they could have made it more like, you know, like not as, how can I explain it?

 

Mum' Child friendly…

 

Joe' Child friendly.

 

Mum' …reading.

 

Joe' …more to read. Because some of it I didn’t understand when it was like saying about the, the different types of insulin and stuff. And I was getting really nervous about that because I was just thinking, “Oh, I’m going to get it mixed up.” But I think if they just like explain it like in a different, like word it differently sometimes, I think it could help a lot.

 

So a bit more simplistic.

 

Yes, simplistic, yes.

 

As long as taking part is safe with no serious effects to his health, Joe is willing to take part...

Joe' I mean I wouldn’t be bothered about taking part in a trial, because it, as I say, it’s helping other people to understand. As long as it wouldn’t have any like serious effects on me, then, yes, I’d be happy to take part. And as long as I’m being watched by nurses and stuff if they changed my medication. But, yes, I’d be happy to take part in most things.

 

Just as long as you understood it all and…

 

Joe' Yes.

 

Mum' Yes.

 

Joe' Yes, got told about everything and understood it.

 

…safety was there?

 

Mum' Yes, yes.

 

That’s good to hear. I think that clinicians would like to hear that. Would there be any sort of barriers, you know things that might stop you from taking part in a clinical trial? For example, when you start leaving school and social life and...

 

Joe' Yes, I mean I’d be happy to take part in a trial as long as it’s helping people. But if, I wouldn’t like to be, if I, like how can I put it? Like, you know, when I’m, if I am at that age where I want to go out with my friends and stuff, and I would rather sometimes like go out with my friends rather than do the research and stuff. But, yes, I’d be happy to take part in any trial really.

 

It’s just sometimes, you know, sometimes there might be something… It’s interesting to know why young people might not want to take part really. If there was something that...

 

Mum' The thing is though, I think there’s always a way round that, isn’t there? With, like what time you would do or how you would, because, you know, you’re not out with friends constantly.

 

Joe' No, I don’t really think, I don’t really think there is a barrier to anyone why they shouldn’t like take part in any research, because it’s just,

 

Mum' It’s all for the good, isn’t it?

Yes, yes, exactly, it’s all for the good. And like even though they, they, everyone has a social life and, you can just reschedule, can’t you? There’s nothing to, I don’t think there’s any age where you, you can say, “No, I don’t, you know, I’m too old for it” or anything because, yes.

 

Taking part in research has helped Joe understand his condition, and he wants to improve things...

In what way do you think it was going to help you and help, help research?

 

Joe' I think it would just help me to understand diabetes and like how to deal with it more, because I was really shocked when I found out. And it did, the research is, because I’ve been through the, you know, the shock of having diabetes, and when other people get diagnosed it’s just like unexpected and stuff. And the research will help people deal with it I think.

 

But they, you had the opportunity to have that time to think about it?

 

Joe' Yes, I had a bit of time. I just, I think it’s better to, for the research anyway, because I’ve been diagnosed and it was a big shock. I know how that feels. And just I want people to understand more and I want everyone to understand more and just make it better for the person who’s got the problem.

 

And how will you feel do you think at the end. It’s a bit difficult to say?

 

Joe' I think I’ll feel like I’ve helped, I’ve helped other people. Like I can just imagine myself back in that position when I got diagnosed and I can just imagine now that, I mean now I’ve done it, that I’ve helped other people. And I hope other people will be willing to participate in some research as well, just to help other people as well.

 

Mum' I think it make, makes you feel good to think you’ve helped, doesn’t it? It’s nice, you know. Because some people wouldn’t. But it’s nice, especially at that age, for them to think, “No, I want to give some input.”

 

Joe' I think with the research it just helped, it has helped me to deal with it a bit more, because just the fact that you know other people are doing this for you as well. So, you know, you might as well chip in and help.

 

Joe took part in a randomised trial comparing different approaches to helping young people newly...

Well, they explained what they were going to do in the trial. They explained like about diabetes. And they said, “The trial is just to see how you cope with, with like, with diabetes.” And in hospital I think it w-, it was better because if I needed any, if I had any questions I could have asked them and stuff. But I think if it, if I had the trial at home I would have been able to like, you know, deal with it on my own more, instead of like asking people.

 

So was there a choice?

 

No. The organisers, they choose for you.

 

I was going to say, I was wondering whether you were randomised. And did, and did they mention about the, explain about the, that grouping in those groups to you?

 

Yes, they, they said, they mentioned that they wanted to see how people dealt with it in different like situations. Like when I was in hospital, if like, you know, at home, to see how people coped with it more. If you got put in hospital it was just for the doctors to help you really and stuff.

 

If you’d have been in the other group, how would you have felt?

 

I think I would have been a bit more worried because it was a complete new thing. It wasn’t, like no one in my family has got diabetes and we didn’t know anything about it. And if I’d got sent home to the other, it would have been like much harder, because if you get stuck on, like on something, you can’t ask. I mean they had, they give you numbers to ring up and stuff, but you can’t like immediately ask and stuff. So I think the hospital was much easier to deal with.

 

So you were quite pleased about that?

 

Yes.

 

I just wondered like in the term randomisation, how you would explain that? Because that’s what happened?

 

I’m not, I’m not really sure about that. They just said just to see how people deal with, and just completely random.

 

Being in a trial was a new experience for Joe, but all the staff were really nice and helpful.

And when I first went in I didn’t know anyone in there and I was really worried because I knew something was wrong when I got diagnosed. And, but, yes, the doctors were really nice and the nurses and stuff. And I mean I think when I was in there I trusted them, when, when I was on the trial I trusted them because they just like, they were really nice to me and they helped me and stuff. And I trust them now obviously and, yes, I think they’re really nice.

This was Joe's first clinical trial and he was pleased to be allocated to stay in hospital for a...

Joe' Well, when I got diagnosed they told me there was a trial and I could either have gone home and see how I dealt with it there or stay in hospital. And I got chosen to stay in hospital. I stayed in hospital for I think it was two, three days. And they showed me how to do my injections and do blood tests and stuff. So they were really helpful, the nurses and stuff.

As part of the trial it was about informing you about the diabetes and helping you, do you think it, the way they did it in the hospital, so I suppose some people may have had, just gone home with information, but you had information and hands-on. How did, you know, is that a good way, do you think that is the, sort of a good way, than being on your own?

Joe' Yes, I think it’s much better than being sent straight home because, well, I know that you might be more comfortable at home, but when, when you do have something like you’re not sure about, being in the hospital you can like instantly find the answer and they tell you what to do and how to do it and stuff. But at home you’d have to ring up and, you know, the problem might already be there before, before you’ve had a chance to ring up. So I think, and I felt more like I didn’t have to worry as much while I was in the hospital. Because I thought at home I’d have to worry about it more, and in the hospital they took care of me much more.

Mum' It felt safer, didn’t it?

Joe' Yes, safer, if, yes.

So a bit more reassured?

Joe' Reassured, yes.

Mum' And confident because you know you’ve got people there you can help you.

Joe' Yes. And I knew if something was to happen then I’d be fine because I was, I was in the hospital.

Mum' We didn’t like staying in, but it was the best place for, for him.

Joe' Yes, I mean I would have, I would have obviously liked to have been at home, because I don’t think anyone likes spending time in a hospital. But yes, I think it was much, much more like –

Mum' best thing, wasn’t it?

Joe' Yes, reassuring when I was in there.

Although they did let me, because I was dealing with it really well, and they said if, if you do go in, if you do get kept into hospital and you are dealing with it really well, then they, they let you go home in the daytime for dinner and stuff but you have to come back and sleep there. Which, that’s why; a good thing I can say is if you’re not worried and just deal with it, you know, they’ll let you go home for a bit.

So you weren’t kind of imprisoned or stuck there? There was a little bit of flexibility?

Joe' Yes.

So that, did that put you at ease a little bit?

Joe' Yes, it did, because then I could see my family and stuff so.

I just think that the, the fact that they were so nice has helped me deal with it. Because I was just so shocked when I got diagnosed and I was worried about everything, about my, my health and my, just everything. And just the fact that they were so nice and helpful just really reassured me that I was going to be okay and everything was going to be fine.

And I just wondered if they sort of allowed that within the trial, you know, within this information giving, whether they, did they give you time to express how you were feeling?

Joe' Yes, yes, I think they did. Because, well I wasn’t always with the nurses and st

Staying in hospital as part of the trial, Joe learnt about diabetes, how to do insulin injections...

So tell me about what you had to do? So you took part, you agreed, so what, what happened then?

Joe' Well, I, as I say, I stayed in hospital for three days. And I just had to just go with like, they, they, they, they showed me how to do my injections and the, where to, where to inject, and they just, they d-, tell me to do my blood tests and stuff and –

Mum' You had to keep a record.

Joe' Yes, keep records and, which I still do. Which is really good because it’s helpful when you go back to see them. Yes, keep records and regular blood, blood tests. And just, they had to just keep an eye on me. And that was all.

Mum' And we go and see the nurse who, who put, who does the trial with us, if you like, the diabetic nurse, don’t we? Regular.

So you see her? I mean did they say, was it just, the trial, was that just for three days or did it go on longer?

I think if people aren’t coping very well with the diabetes then they have to stay in longer. But if you just cope with it really well, they, they say after three days that you can go home.

But you’re still part of the trial then as well?

Yes.

Mum' Now, yes, yes. It goes on for a while, doesn’t it?

I’ve got no idea.

Mum' I think it’s about, is it? a good few months, isn’t it?

Joe' I think it was, yes.

So tell me what the trial was about then. What were they, what was, what were they doing?

Mum' It’s to see if people cope better at home or –

Joe' In a hospital.

Mum' it’s best to be in hospital.

Joe' Yes, you know, for when people get first diagnosed. Because, as I said, it was a big shock and hard to deal with at first. And the trial was just to see if people could deal better at home, you know, in their own environment and with everyone they know around them, or in hospital where they can be, ask questions.

Mum' And we found we preferred the hospital with people on hand who know about it.

Joe' Yes.

Mum' Don’t we?

So you sort of, after being in the trial you kind of preferred that option?

Mum' Yes, yes

So what happened, during the three days you just stayed in and they showed you –?

Joe' Yes, they explained everything about my insulin. Like there’s NovoRapid and Levimir insulin which is, the No-, the NovoRapid is when you eat, which is, like quick acting insulin, and the Levimir is the one I have of a night. And they explained me what time to do it and stuff and when to do it and how many times to inject a day. And they, they, they went through my diet and stuff.

Mum' Saw the dietician.

Joe' We saw the dietician and she explained everything xx.

Mum' And carb counting.

Joe' And any question I had, they, they answered.

Mum' And still do, don’t they?

Joe' Yes, they still answer us.

Mum' We just have to phone up and…

Joe' Yes.

It’s really good, isn’t it?

Joe' Yes.

Mum' The nurse will phone