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Paul - Interview 38

Age at interview: 29
Brief Outline: Paul's son was diagnosed with diabetes two years ago when he was aged 6 years. Soon after his son's diagnosis Paul was invited to enrol his son in a protocol for a randomised controlled trial to assess hospital versus home management in childhood diabetes.
Background: Paul is aged 29 years, is White British, a full time homemaker and lives with his son aged 8 years.

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Paul is 29 years of age, White British and lives with his son aged 8 years. Paul was invited to enrol his son in a protocol for a randomised controlled trial to assess hospital versus home management in childhood diabetes.
 
Because it was two years ago that Paul was invited to enrol his son, he remembers being given lots of information though can’t recall what the purpose of the trial was or what was in the information. He explains that his son had just been diagnosed with diabetes and he found it all a bit overwhelming with so much information to take in. At the time he was more concerned about his son’s health and management of diabetes at home. 
 

However, Paul is very supportive of clinical trials and research to help other young people with diabetes in the future and of course to help his son. If his son wants to take part in future trials he will fully support him.

 

 

Clinical trials are important to help improve understanding of how treatments work and how people...

Clinical trials are important to help improve understanding of how treatments work and how people...

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What’s your understanding of a clinical trial? What does it mean to you?
 
Well, it’s, a clinical trial is just where obviously they’re keeping an eye on how things are like react, like how things are working and reacting to certain things and stuff. So to me it’s a good thing because you, it’s like in, for the future sort of thing, to make it better, to make it, you know, to make diabetes, as I say, not better but, you know, a lot easier for you to do and like to the, how do you put it on, put your finger on it like to get it perfect. Do you know what I mean? Just like your whole body and the insulin, the amount of insulin you have. Like they have the stuff now where you can wear like a belt and it’s got a little box on which like if you need it, it’ll just inject it itself. So there’s a lot, you know, it’s good resource because it works in the end.
 
But if there was anything to improve your experience, you know, taking part in the clinical trial, thinking of that bit of the treatment, is there anything that can be done to improve it?
 
Well no, not really, not that I can think of anyway, because everything to me was good. But, you know, they’ve just got to keep doing what they’re doing, obviously the research, because it all helps in the long run, years to come. You know, they might actually get a cure for it, which would be amazing. But they could. Because, you know, they’re finding cures for everything these days. So that’s why they do so much research, because, you know, it helps.
 
So in a sense are you supportive generally of clinical trials?
 

Well, yes, because in the long run, you know, it’s better for the people, better for all diabetics really. Because they, you know, with the research they’d be able to control it more. And, as I say, one day they could have a cure, maybe can get rid of it. Which would be a, would be an amazement but be brilliant.

 

 

 

The trial was to monitor Liam’s diabetes, how he responded to the insulin he was given to take,...

The trial was to monitor Liam’s diabetes, how he responded to the insulin he was given to take,...

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And do you know what the purpose of the trial was? Do you know why you were invited?

 
Well, it was to monitor how Liam, like my son, was doing on like the like obviously the NovoMix 30, the insulin they give them and how he reacts to it and like certain stuff that makes him high, low, all different type of things like that.
 
So was it something new? A new type of injection or insulin?
 
No. But it’s because obviously he was just only diagnosed it’s to see how he was reacting to it at the time. Because obviously not everyone’s the same. So obviously they had to see if he was, obvious-, because there’s type 1, and type 2 where he might have been able to have the tablets, but he’s not, he’s type 1, so he has to have injections. So it was just to see how everything was going, to keep a monitor on him, I think, to keep an eye on, on him. And also make sure I’m learning at the same time. Because obviously you can’t just go, “Oh, your son’s got diabetes. Go home.” So some, you have to have training. And every, personally, everything that went on, I thought was brilliant. Like the hospital were absolutely, they were brilliant.
 
 

 

 

At the time of his son’s diagnosis there was a lot of information to take in, but the nurses were...

At the time of his son’s diagnosis there was a lot of information to take in, but the nurses were...

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The children’s hospital. They just said to me it would be good for research and obviously to help my son Liam. So we went ahead with it.

 
And did they give you lots of information to read?
 
Well, yes, yes, they, but obviously they give you booklets, everything about it, they give you. So you, obviously you know what’s going on. But it, it does help you a lot.
 
Did you feel that you had enough information to make the decision?
 
Well, yes, yes. Everything I thought was up, up to standard, the, the information, the way they help you out. I, like personally I thought they were good. Because obviously I was new with it, with my son just only being diagnosed. And it did help a lot.
 
And did you have any questions at the time?
 
I did, but I can’t remember now. I did have a, obviously you do have questions, but everything they answered with I was satisfied. Which you know, I haven’t had no problems. And everything’s been, like it’s been two years now, but everything’s been okay. I haven’t, haven’t had one problem yet, touch wood.

And I suppose that’s sort of one of the reasons I’m asking what do you remember. Because sometimes when you, when you have been recently diagnosed or your child has been and then they ask you to go on a trial, it’s very difficult to take in all the information when you, when you’re interested in more the care.
 
Well, yes, because you’re so, because you’re sort of trying, still trying to get your head around it in the first place. So it’s a lot to take in and you, you know, if you squeeze too much of it in you’re just going to explode. So some things, it’s like, it’s hard to explain, but it’s, you know, it’s very awkward on some of the, some things anyway.
 
But it sounds like they went through things with you.
 
Oh, yes, yes, yes, they did, they go through it. But, you know, it’s just, it’s a lot for you to take in.

 

 

Paul remembers there being different groups, but can’t remember what they were, he was happy for...

Paul remembers there being different groups, but can’t remember what they were, he was happy for...

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So did they mention any sort of being in a group, you know, whether you’d be chosen to be in one group or another group? Did they mention that? Do you remember?
 
I’m not sure, see, I’m not too sure. I do remember groups but I don’t know if it was like putting like us there and them there, if you know what I mean. See, you did have, you did have groups, yes. I think it might have been. I’m not too sure.
 
It might have been a control…?
 
That’s the control group, yes, I did. That, that rings a bell but, as I say, it’s been that long, it’s sort of... The only things that stick in your head is everything else what I’ve got to do for my son. And that’s the, like the, try to keep on top of his needles, his finger strips, his insulin, making sure I’ve got everything and like not, it never runs out and everything’s like still in date because you’re only allowed it out the fridge for three, I think it’s three months and then obviously it’s no good after that. So you do have to make sure you’re on top of everything.
 
So it’s, more important is his care?
 
Well, yes, because you’re concentrating, see, anything else, you’re concentrating more on that. So it sort of, it sort of sticks in the back of your head, but it’s obviously, it’s, unless you read it or someone tells you, it won’t pop up into your head because you’re focused on the one thing. And, which is the main thing, which is obviously his care, to make sure everything’s all right for him.

And would it matter, did it matter to you that if you were in the control group and weren’t in the intervention, does that, did that make a difference in the decision at all?
 
Well, to be honest, I’d have to say no, because everything that, like everything that’s gone on I’ve, I’ve thought was spot on. It’s helped me; it’s really helped me a lot. So I couldn’t, I couldn’t say nothing bad about it. Every, everything to me is brilliant. Because, you know, he’s, I think my son’s been diagnosed now for two, two and a half years, and I haven’t had a problem on that in two and a half years. So to me that’s, that’s good. And it’s really, it’s really helped like. Personally I was scared at first at, like about learning of, you know, it’s a lot for you to take in. And then you’re giving him injections, doing his finger pricks, all stuff like that, and his food. But, to be honest, I didn’t think I’d be able to do it. And I did. It, they really did help. See, it, I, like obviously when he first got diagnosed and we were still in the hospital, that’s when you’re thinking, “Oh, I have to go home and do this.” But obviously they show you there first before you go home. And, to be honest, when they showed me I didn’t have a problem then about going home. It’s just at first I was thinking about it, going, “I’m going to have to take him home and do this. He’s going to be doing this forever.” But that’s before obviously I learnt it in there. And it, to be honest, it was brilliant. Like it all, it all helped me and I’ve had, I haven’t had a problem. So to me, they done good for me. They done brilliant.
 
 

 

Taking part in clinical trials helps improve treatment, but his son would have the final decision.

Taking part in clinical trials helps improve treatment, but his son would have the final decision.

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And is there a time when you might stop your child taking part in a clinical trial?
 
Well, the, the only time I’d stop it is if my son, my son obviously didn’t want to. And that, that would be the only time. Because obviously if he doesn’t want to do it I can’t force him to. It’s, it’s his decision. But, you know, obviously if it’s going to help him, I couldn’t see why he wouldn’t.

And would you take part in another one as your son gets older?
 
Well, yes, to see, yes, because obviously, obviously when he’s older, because he’s only like, obviously he’s, well, he’s 8, or would have been like 6, well, 6½ say, so obviously when he gets older it’s to see the change in the way everything’s gone. So, yes, I would like him to do it when he’s older. Because that’s how, you know that’s how the, the doctors learn and, you know, that’s how they work it like. Because from when he was a, like 6½ and when he next gets it done, how so much is done on it. Like he’s, obviously he’s had to have more insulin, he’s had to have less, certain things like that. You know, it all, it all helps.
 

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