Vicky - Interview 36
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Vicki’s nine year old daughter was diagnosed with diabetes at the age of two. Vicky gave consent for her daughter to take part in a clinical trial to determine the best way to give information to young people with diabetes. Vicki and her daughter were happy to take part. Theywere approached by a researcher at a clinic appointment and asked whether they would take part in a trial. They were told at that time that it was related to the way information is given to children with diabetes and involved filling in a questionnaire when attending normal clinic appointments “And we filled one of those in each time we went. And I think in total there were maybe three or four. And it was all related to sort of how my daughter felt about particular things to do with her treatment, to do with the way some of the medicines made her feel, how she got on in sort of day-to-day, day-to-day life.”
Vicky and her daughter were randomised to receive the existing information pack. She understood...
Vicky and her daughter were randomised to receive the existing information pack. She understood...
And I mean when we first agreed to do the trial, it, I mean I think the fact that it was all to do with information and it wasn’t to do with changing her treatment, her medicines or anything like that, it was just to do with information. And I guess as a result of that maybe we didn’t think about it as much as we might have done if it had been, you know, there’d have been more impact if it had been a change in treatment or sort of a new treatment that was coming out. But even so, I mean when they said that it would be a random selection as to whether we would get the new pack of information or the old pack of information, and we were actually selected for the old, for the old pack of information. So in actual fact nothing changed for us in the way that anything was happening with my daughter’s treatment or the information even that was given. I mean that was a bit disappointing because you always think if there’s something new coming along then it might be useful to, to, to see it. Because I guess if as a result of the trial it’s decided that’s not the best approach, then we’ll never see that. But then it’s not the best approach, is it? They’ve made that decision based on the research. So I think that, that’s fine. And, you know, initially when they said that we would get the standard information, then, you know, it was a bit, “Oh, what a shame.” But it’s, I think it’s, it, it’s worked out fine. And we’ve not seen any differences. So, you know, there’s, there’s not been any impact from that point of view. And it has just been answering the, the questions on general every day, day-to-day stuff really.
Supporting children and ensuring they have all the information they need will be important when...
Supporting children and ensuring they have all the information they need will be important when...
No, well, I don’t know. No, it’s not really come up. But I can see that it perhaps will come up. I mean just through the nature of people wanting different things and thinking, you feeling what’s best for your children and them thinking what’s best for them. So I’m sure that, yes, has a potential to be a problem. And I don’t know what you do about it. I suppose ultimately it is their choice, but you’ve got to help them come to that decision, you know, with having all the information that you can give them.
If you think there is a new and better treatment then you want it, but until they have done a...
If you think there is a new and better treatment then you want it, but until they have done a...
And I mean when we first agreed to do the trial, it, I mean I think the fact that it was all to do with information and it wasn’t to do with changing her treatment, her medicines or anything like that, it was just to do with information. And I guess as a result of that maybe we didn’t think about it as much as we might have done if it had been, you know, there’d have been more impact if it had been a change in treatment or sort of a new treatment that was coming out. But even so, I mean when they said that it would be a random selection as to whether we would get the new pack of information or the old pack of information, and we were actually selected for the old, for, for the old pack of information. So in actual fact nothing changed for us in the way that anything was happening with my daughter’s treatment or the information even that was given. I mean that was a bit disappointing because you always think if there’s something new coming along then it might be useful to see it. Because I guess if as a result of the trial it’s decided that’s not the best approach, then we’ll never see that. But then it’s not the best approach, is it? They’ve made that decision based on the research. So I think that’s fine. And, you know, initially when they said that we would get the standard information, then, you know, it was a bit, “Oh, what a shame.” But it’s, I think it’s worked out fine. And we’ve not seen any differences. So, you know, there’s not been any impact from that point of view. And it has just been answering the, the questions on general everyday, day-to-day stuff really.
Vicky was a little disappointed her daughter was allocated to the standard treatment group.
Vicky was a little disappointed her daughter was allocated to the standard treatment group.
I don’t know whether they explained it. But I think, well, my understanding is that obviously they’ve got to pick some people who will get the new pack of information, or the information in a new way, and there have got to be some who, who continue with it the existing way, obviously to view what the results of the outcome of the study are. And I think the researcher went away and did something on a computer and it came up with a, with a magic number and, “Oh, right, you know, you’re going with the…” So I’m presuming that it was just a randomiser in that it just randomly chose whether we were going to be yes or no.
Vicky would like to know the outcomes of the trial and whether her daughter's treatment should...
Vicky would like to know the outcomes of the trial and whether her daughter's treatment should...
Well, I mean I suppose, I feel that I would quite like to know the outcome of the trial and to see, you know, to see what then they will change as a result, if anything. Because I guess things may stay exactly the same. But it will be useful to know that, you know they had assessed everything and then decided that they would stick delivering information in the same way. But apart from that, no real feelings as it ended, you know.
The decision take part is easier when the risk is minimal. If the risk had been greater, Vicky...
The decision take part is easier when the risk is minimal. If the risk had been greater, Vicky...
Well I didn’t see any negatives in doing it. In, sort of in not doing it there, there wouldn’t have been any, any, it wouldn’t have helped anybody. We wouldn’t have been any better off apart from, you know, not having to sit and do the questionnaires, which really wasn’t a chore at all. There was no reason not to. You know, it wasn’t a major dilemma. You know, if, if it was all about treatment and things like that. I mean I know information is treatment as well. But, so there were, there wasn’t really much of a, you know, the motivation was, “Well, we might as well, seeing as we’re here. And, you know, it, it might help towards changing things for the better, if that’s the way it needs to be.”
Vicky didn't understand how the questions in the monitoring questionnaire related to the trial...
Vicky didn't understand how the questions in the monitoring questionnaire related to the trial...
Like many parents, Vicky felt that it was better to discover there was a money voucher at the end...
Like many parents, Vicky felt that it was better to discover there was a money voucher at the end...
We’ve received some vouchers. My daughter’s received some vouchers. And I, I don’t remember them saying at the start that we would get them. But they’ve given her a voucher each time we’ve, we’ve filled the [questionnaire]
Vicky will ask about the results of the trial at her next appointment.
Vicky will ask about the results of the trial at her next appointment.
Well, I guess the only thing would be maybe to explain a bit more how the questionnaires related to what they were trying to get out of the trial really. Because as I said earlier, it, sometimes I thought, “Well, I really don’t know why they’re asking this” related to the topic of the, the trial. But, so I think that would have been perhaps useful. And also the follow-up. So, you know, informing us of the outcome. Obviously we’ve only just finished, so there’s time for that to happen. But there was no mention that that would happen in the near future. And I should have asked. But, but I think that would certainly be useful for any trial.
Vicky would have liked more explanation about the purpose of trial and to be informed of the...
Vicky would have liked more explanation about the purpose of trial and to be informed of the...
Well, I guess the only thing would be maybe to explain a bit more how the questionnaires related to what they were trying to get out of the trial really. Because as I, as I said earlier, it, sometimes I thought, “Well, I really don’t know why they’re asking this” related to the topic of the, the trial. But, so I think that would have been perhaps useful. And also the follow-up. So, you know, informing us of the outcome. Obviously we’ve only just finished, so there’s time for that to happen. But there was no mention that that would happen in the near future. And I should have asked. But I think that would certainly be useful for any trial.
Vicky would consider other trials if it would help her daughter and other children with diabetes...
Vicky would consider other trials if it would help her daughter and other children with diabetes...
There would, there would be a point. But I think it’s difficult to know what that point would be. Because I mean obviously a change in her treatment which may have direct effect on her health, then I think we’d sort of have to look into it more and understand more about, you know, the development of that particular drug, say, beforehand and how far they’d got and whether it was likely to be successful and, and things like that. I think, yes, anything which would have an impact on her health, then we’d consider. And I mean I don’t know what the point would be where we would say no, because obviously the only way that you get to see whether new things work is by trialling them. But obviously it’s that balance, isn’t it? Between letting somebody else do it.