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Gary - Interview 39

Age at interview: 47
Brief Outline: Gary and his son agreed to take part in a randomised trial on the management of diabetes in young people. Gary and his son were randomised to continue to receive the current information and care.
Background: Gary, aged 47, is married with two children. He describes himself as White British and works part-time. His son was diagnosed with diabetes at the age of four years, he is now 13.

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Gary, aged 47, is married with two children and works part-time. His son aged 13 years was diagnosed with diabetes at the age of 4. Recently Gary and his wife agreed with their son to take part in a randomised trial on the management of diabetes in young people.
 
They were invited to take part by a research nurse when attending a routine clinic appointment. The nurse briefly explained what would be involved if they took part and the purpose of the study. Because there was nothing invasive about it they agreed. They all felt that by taking part would help other diabetic children. 
 
The study involved the completion a series of questionnaires; one for Gary and his wife to complete as parents and one for his son. The questionnaires were sent to their home address and they returned the completed questionnaire back to the research team, using the pre-paid envelopes provided. The questionnaires took approximately 30 minutes to complete and were fairly straight forward with multiple-choice answers. The questions were about their son and how they felt he managed his diabetes at home and at school.  
 
Gary doesn’t remember how many questionnaires he completed, although he thinks it was two or three in total.   Gary said that he was surprised at how taking part in the trial had helped in son understand more about his diabetes. However, he would like to know the results of the trial and is unsure if they will receive any feedback from the trial team.
 

 

 

Taking part in a trial that involved completing questionnaires was an easy decision for Gary and...

Taking part in a trial that involved completing questionnaires was an easy decision for Gary and...

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We went to an appointment at the children’s hospital in [area], the diabetic part of it. And whilst we were waiting I think a diabetic nurse came up to us and asked us if we wanted to take part in a trial. Me and my wife agreed, you know, because anything to help diabetic children, research, anything like that. We were briefly explained what would be involved. We’d get sent a questionnaire which, one for me, one for me and [my wife] and one for Danny, which we’d each have to fill in separately. Briefly explained what it was about. And that was it really. There was nothing invasive about it. It was just, you know, half an hour out of our time towards something, towards, you know, this report that they were putting together. That was it basically. There was nothing difficult or, you know, like I say, invasive or anything about it. So that basically was it.
 
Do you think that made a difference, that, that it wasn’t invasive?
 
Yes, it did. Because over the years with Danny there’s been an awful lot to take in and we’ve had to take on board a lot of stuff. It’s changed Danny’s life and our lives. And we just want things to, you know, be on an even keel. We don’t want things to, you know, disrupt anything, you know, go out of our way to do things. We like to like keep Danny as even as we can without disrupting things.

If it had been a change of treatment, would you perhaps have thought more about it, do you think?
 
Oh, yes, we, yes, we would have done. We would have definitely thought more about it. Whether it meant like having less injections every day or no injections or an insulin pump or any, anything like that, yes.
 
Yes, or the method of delivering –
 
Yes, the method, yes.
 
-- the insulin.
 
Yes, if it’s like needle free. Or anything, yes.
 
But would you consider other trials though, even if they were…?
 
I think we would, yes, yes. But I’d need more, rather than a questionnaire, if it was to like involve his dosage or his; changing of his dose we’d need more than just a questionnaire. We’d have to have like a visit or something or go somewhere to see somebody rather than just getting a letter and signing it. You know what I mean?
 
 

 

Completing the questionnaire at home was convenient for Gary and he would discuss the answers...

Completing the questionnaire at home was convenient for Gary and he would discuss the answers...

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Did you have to fill it in there? Or come away and fill it in?

 
No, you filled it at home, when it come through the post. It was about how, for, more for Danny, how diabetes affects him. And one for us, how it affects us.
 
So the questions were all about your son and about how you felt your son was coping?
 
How we think, yes, is he able to, you know, get around everyday life? Is he like normal? Can he do things that other children can do? And it was just a multi-choice thing. You know, poor, very good, excellent. A lot of it was excellent and very good, to be honest.
 
It didn’t take long?
 
No, no, it didn’t take long, no.
 
Easy to do. And did the questionnaires come separately then, for you and your son?
 
No. They all came in one envelope. There was just one for, one for us as parents and one for Danny.
 
Did, did you share at all? Did you share information or have a look?
 
Yes. We had a look at Danny’s once he’d filled it in, and he had a look at ours. And we pretty much both agreed. Because we all know what he can do and what he can’t do, so there was nothing difficult about it.
 
Did your wife fill in any of the questionnaires as well or was it just yourself?
 
Well, I filled them in, and I just read the questions out to her. And we like, you know, more or less agreed in, on the same thing. You know, it just says, you know, “Can Danny is Danny mobile as well as other non-diabetic children?” We both more or less say, “Yes, excellent.” You know, we, we more or less said the same thing for each question. And, except the odd one or two when you think, “Oh, you know, maybe he’s not so good at this as he should be. Oh, we’ll just put very good instead of excellent” you know. So, yes, we had, discussed every question. But we both knew what we were going to; we more or less both came up with the same answer.
 
That’s good. What happens if it had been different?
 
I don’t know. We, we give examples of why it was, there was one or two where we didn’t agree. We’ll say, “Well, what about that time when, you know, he did this or he couldn’t do that?” And we’re both, “Oh, just tick fair for that one then.”
 
 

 

 

It would be nice to know the outcome of all the information collated by the researchers. Gary...

It would be nice to know the outcome of all the information collated by the researchers. Gary...

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And have they said anything about results at all?

 
I don’t think they have. I’ve not heard anything, no, since we sent it off. No, I can’t say that I’ve, I know anything about results.
 
Do you think, do you think you would like to know though?
 
I would like to know what, you know, what the outcome of all this is. Because obviously we’re not the only ones doing it and, you know, I’d like, I’d like sort of like an end result to it if it has finished now. I don’t know if it has or not. So it would be nice just for like a letter to come saying, you know, what, all the information they’ve collated and what’s come out of it.

Because sometimes you might get some personal feedback, but you don’t really know how you’ve helped at, you know, overall.
 
Yes, yes. It would be nice, yes, it would be nice to know what’s actually happened and, you know, what, the end result of it all. It’s only natural, isn’t it? To find out, want, want to know rather.
 
I think it’s important as well, some parents said it’s important the children know as well.
 
I think, yes, I think Danny would be interested to know, because he’s done one or two interviews, not just today. I’m quite surprised how open and how much he talks about it. Because it’s not, he doesn’t talk like that, well, through everyday life, you know what I mean about his feelings and his diabetes and stuff and trials and things like that. So I was listening and, like when the other lady came a couple of weeks ago, I was quite surprised how much, how much he talked really and how much he said about his feelings and how it affected him and things like that. Because he doesn’t talk like that to us, not in everyday life. It was like he was like grown up a bit. You know what I mean?

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