Jane - Interview 28

Age at interview: 41

Brief Outline: Jane and her daughter both took part in a trial to test the delivery of information and support given to young people with a diagnosis of juvenile diabetes. As this was a non-invasive trial they were both happy to take part.

Background: Jane, aged 41 years, is White British and works full time in Primary School Education. She lives with her husband and their daughter who is 13 years of age. Their daughter was diagnosed with Juvenile Diabetes at the age of 11.

More about me...

 Jane, aged 41 years, is White British and works full time in Primary School Education. She lives with her husband and their daughter who is 13 years of age. Their daughter was diagnosed with Juvenile Diabetes at the age of 11. In 2010 Jane and her daughter Saskia attended a routine clinic visit at which they were asked to participate in a trial. 

 

Jane explains that they were approached by a nurse during an outpatient visit. The nurse took them to an office and spoke to Jane and Saskia together. Jane explains that the decision was easy for them both as it seemed a straightforward trial and was non-invasive' “And because I didn’t feel that I was a great deal of inconvenience or hassle or, so I’m more than happy to just say yes that’s fine”.

 

Jane explains that she was unsure to the purpose of trial, although she remembers that it was something to do with what support is given to young people when diagnosed with diabetes. She thinks it was to compare two different forms of support. One form of support is the current drip-feeding of information compared to providing an information pack after diagnosis. 

 

Jane is supportive of clinical trials in general and would consider something similar again in the future. Jane also says that she would consider other types of trials, of course with her daughters consent.

 

Jane and her daughter took part in a trial to compare treatment options for children and young...

 Yes, yes, I think we got a big, we got a pack there and then I think, if we said yes, I think. Saskia came; I think that’s when Saskia came away with a big file full of lots of information. And my understanding was, thinking back, that the trial was to help them decide whether on diagnosis as a child, I think it’s going to be for, Saskia’s category was sort of teenage because by that time she was 12½, so I think she was in the sort of, that juvenile rather than young child, what support is given on diagnosis. Is it this big pack that she then got, which has got all the information and is child friendly, that’s written for children? Or do we do it in the way we’ve, they’ve done it where, they did give us a pack and some information at the start and then drip-fed some of the information through the diabetic nurse? But I don’t really know how it will be completely different, because I’m assuming you would still get support of the diabetic nurse, and this is just an information pack.

 

So it’s kind of looking at which is the best way to –

 

Yes, inform a-, adolescents I think and support them with the diagnosis. Because the, the research that we fill in is very much from the basis of the child. So Saskia fills in how she feels and I fill in how I think she feels a little bit, or how I feel about her.

 

Yes, I think they’re thinking of giving it straight away, seemed to be the impression. Which is fine, because you can choose when you read it, can’t you? You do, the problem with diabetes is you need a lot of information. So it’s all very well saying, “Well, we’ll just drip-feed it and . . .” You need a lot of information because it’s quite complicated. So if something happens and you haven’t had that piece of information that’s more of a worry. So we had a diabetic nurse who came who was a big support and was very good. But I’m the sort of person who would just be like, if I knew that they were going through a process, which I can look back and see they were now, “I’ll see you here with Saskia first” do you know what I mean? “And we’ll do...” I’m more the sort of, I don’t need that hand-holding. I’m more, “Tell me everything” because I’d worry if I don’t know everything. I’d like to know everything and then I’ll deal with it. Everybody’s different, aren’t they? I think they go through a process of support. Because I’m not sure everybody, you know, we manage it well, Saskia’s very well controlled because it’s, to us it’s very very important, her physical health, and I’m not sure it, she, everybody is as controlled as she is, do you know what I mean?

 

I mean I know from, you know, friends and things who’ve got illnesses where, you know, a normal clinical trial I would think about was where you’re testing something new in, in comparison to something, so you might get given a placebo or you might be on a new drug and then they would make a judgement based on the results of that. So I did think, “Oh, I’m not quite sure how this works.” But now talking to you it’s obviously, it, it’s reminded me what they said at the very beginning about comparing the treatment options as opposed to anything drug related.

 

The questions in the questionnaire they had to complete weren't about diabetes. It was more to do...

 It is literally just as you’re at the diabetic clinic, each time you go there is a, an A4 pack of information asking you to score a series of questions related to physical health. So, what, Saskia’s health over the last month. So it would have an example question like, “Saskia’s been unable to exercise at school” and then it would be, “Never, sometimes” to, “Yes” do you know what I mean? And then it would have some things relating to how Saskia feels, like, “Saskia feels sad” or, “Saskia feels embarrassed” or, do you know what I mean? about the diabetes. She would have to answer them. She just goes through it going, “Never, never, never, never, never.”

 

So is the form just for her or for both of you?

 

There’s one for her and there’s one for me.

 

So there’s a form each.

 

And mine is more about Saskia. So she, you know, “Saskia has not had a problem with exercise” or whatever. It will be the same question, just worded slightly different for a parent as a child.

 

And do they ask at all about the information? Or is it just all about –?

 

No, it’s all about the illness. Which is why it’s a little strange to know how that information will… I suppose if they get a lot of children answering questions about, “I feel sad. I feel embarrassed. I feel problems with friends, problems at school, problems managing” then that might affect the information that they put in the pack perhaps. You know, maybe they, they’re, maybe they’re trying to find out what information needs to go in the pack. Which wasn’t really explained. It was more about the pack. But that makes more sense if it’s about what goes in it, isn’t it? It needs to be relevant to somebody who, to how the child feels, not how we think a child might feel being diagnosed with diabetes. I think that might be it.

 

It was an easy decision to take part in a trial of different types of information, but if the...

 Yes, I mean if it has to be done there and then, I’m wondering if they should contact you not there and then, do you know what I mean? if they should agree to make contact with you. They probably wouldn’t get as many people signing up. Because you sign up there and then, don’t you? And they need people to take part. And it doesn’t bother me. I mean if it had been a drug, you know, of course I would have asked hundreds more questions and it would have been a completely different decision for me to make. But it wasn’t. So it was a paperwork decision, so it was not a difficult decision to make.

Jane would have liked more explanation how the questionnaire related to the information pack...

 Yes, I think if the trial, which is where it perhaps needs to be explained more, if the trial is related to not just whether you get this pack as opposed to not a pack, but whether, what you get in the pack, then, yes, it would perhaps be helpful to have some questions. But I’m not sure if the questions were for Saskia she would care. She doesn’t read up about, she knows about her illness, she manages it herself, but she doesn’t read about it because she doesn’t want to think about it all the time. Children don’t really want to read stuff.

I think when they come to teenagers.

 

Yes, they’re not interested, are they? They just deal with what they need to deal with to get through the day. They’re not really bothered, are they? They don’t want to talk about it all the time.

 

I think, looking back now, I probably needed, not that it would bother me, but only now talking to you, a greater understanding of what we were actually doing, do you know what I mean? as in, “Is this about what goes in the information pack? Or is this about whether you get the information pack?” I can’t really remember. So when you’re in hospital, when you’re in hospital doing that at the time, you’re also doing lots of other stuff. You know, you’re worried about what the results are going to be for your daughter, you’re doing the blood tests, you’re coming out of school, you’re going there, do you know what I mean? That, that, I’ve got to be perfectly honest, is the last thing to concern me, because that isn’t actually affecting Saskia’s health at that point. At the same time you’re being weighed and measured and blood sugars and diet and health and, you know. So that is just something that took some time at the end.

 

Jane would consider other trials for her daughter if they could help other children with diabetes...

 Yes, I would consider anything again, yes, to help other people, definitely.

 

And what about if it was like a treatment?

 

It would, yes, I would consider anything. And I think, you know, with diabetes a lot of it is about progressive treatment and trying to change things. And, you know, we manage on the existing regime, but we’re always reading about stuff. So if that needed people to, and I could make a decision and had enough information, then I would consider it. Obviously, with Saskia’s views on board.

 

Yes, yes, yes. I don’t know how it would be if it was something, you know, because diabetes is, is, although the actual illness, you know, they have to inject themselves, they have to… So it’s all very well somebody saying, “You have to do it” but they have to do it, don’t they? It’s their body. So if it was something like that and she didn’t want to do it, then I’d have to really consider. Even if I felt that it was going to help other people and maybe help us in, sometime in the future, but she didn’t want to do it, then we probably wouldn’t do it. I think it’s bad enough having their illness as it is without being forced to do something you don’t want to do, that you don’t need to do. If you don’t need to do it, then her view would be, “Why?” But she might, she might take a pragmatic view. She, you don’t know unless you’re faced with it, do you? She might think, “Oh, well, that might help me in the future. So if I don’t do it and nobody does it, we won’t get a better way of dealing with the insulin or whatever.”