Kathryn - Interview 29

Age at interview: 39

Brief Outline: Kathryn gave consent to her daughter to take part in a clinical trial when attending a routine clinic visit. The trial was a randomised trial on the way information is given to young people with diabetes.

Background: Kathryn is aged 39 years, is White British, married with two children and has full-time employment in the health sector. Her 14 year old daughter was diagnosed with diabetes at the age of 11.

More about me...

 Kathryn’s daughter, aged 14, was diagnosed with diabetes at the age of 11. Kathryn gave consent to her daughter to take part in a clinical trial to determine the best way to give information to young people with diabetes. Kathryn and her daughter were happy to take part. They were 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. They completed a questionnaire at each clinic appointment for the duration of the trial. Kathryn completed a questionnaire that asked about how her daughter was feeling, and her daughter filled in a questionnaire asking questions on how she felt and how she was managing her diabetes day-to-day. 

 

The trial was a randomised trial. Participants were randomly allocated to the standard treatment or the treatment group. The standard treatment received care as normal. The treatment group received a new style information pack. Kathryn’s daughter was in the treatment group and received the new style information pack. 

 

Kathryn felt she would have liked a bit more information on the purpose of the trial. Kathryn is supportive of clinical trials if they help to improve the care and treatment of children and young people with diabetes.

 

It was a year ago when Kathryn and her daughter were invited to participate in a trial and...

 It was. And she was just, I think just randomly picking out some names, I think just different age groups. So Chloe was obviously in the higher age group, because there was lots of little ones there, isn’t there? So I think Chloe was in the higher age group. And she just came and said, “I’ve just picked you out of this sort of group of children. Are you happy to sort of do sort of this survey?” And we just found out more about it and just said, “Well, yes, yes.”

 

And what information did you have?

 

She didn’t give us that much actually on that one. Didn’t, it was just, she just said, I don’t think she actually give us anything really to read either. I don’t think there was anything like, if I remember rightly, because it’s, oh, it’s over a year ago. I think she just said, “Just, just fill this questionnaire form today.” So she showed us that, that questionnaire form about, and it was really about feelings as, you know, it wasn’t anything to do with the, the sort of condition itself. It said it was mainly about how you felt about it all. And I think it went on like, depending on what question it was, you either felt, “How would you feel like in a week?” or, “How would you feel like from a month from like a month ago?” and things like that. So there wasn’t a lot of information prior to being picked out for it. But then when we’d signed up for it, they give her, give Chloe quite a large packet, packet of things really that she could look through and, you know, quite fun things obviously because she was 13 then. So they gave her quite a good selection of stuff to look through. And then she got some vouchers at the end of it for her trouble as well.

 

I mean she did sit with us for quite, she did, on the day that she was telling us about it, she did sit with us, as she did with about you coming, she did sit with us for quite a bit while we were waiting to go and see the doctor. She did talk to us about what it involved.

 

Kathryn says that trying to take in all the information at a time when you are thinking about...

 Yes, yes, probably. Because when I’m at clinic I have my mind on questions I’m going to ask the doctor, you see. I don’t always take in things because I have my questions, because I always have questions when I go of things I want to ask the doctor. So it’s then somebody come in telling you a load of, for probably half an hour, she was there about half an hour talking, you don’t sort of take it all in, do you? really. Whereas if it’s written down and you can go away and read it in your own, at your own leisure, you take things on board a little bit better, don’t you? really, when you’ve got time to go away. I do anyway. I suppose not everybody’s the same, but I do. I have to read things, me, really, rather than just be told them. I probably would have still done it, but I might remember it a bit more [laugh]. I might remember it a bit more.

 

She, I mean, she, she was dead nice and she did come and explain everything to us. But again, because she did tell us a lot of information on the day, you, you sort of struggle sometimes to take it on board, don’t you? Because that’s not what, that’s not what we were, what we went for. So when you’re not expecting something, you, you don’t always prepare yourself, do you? And there, I remember there being a lot of information to take on, take in and I probably didn’t take it all in really about what they were going to do with it and what we were going to get out of it.

 

Kathryn's daughter was hesitant at first because she was unsure what was involved; but after the...

 I think it was just because it was just out of the blue. We didn’t have any prior warning. We were just sat there, as we do every three months, we sit in clinic. And she just came up to us and just said; “Hello” I can’t remember her name, “Would you be interested in, you know, participating in this survey?” And then she told us a bit about it and obviously... I said yes. Chloe was a bit hesitant. Because twelve months ago she wasn’t as open as she is talking about it. She was very uncomfortable about talking about diabetes. Didn’t really like want anybody to know. So she wouldn’t really talk about it that much. Whereas now she is more comfortable. Still doesn’t like it. If you asked her, she doesn’t like it, but she will, is more open about it. So she was a bit hesitant. And, and I think even after we came away, we said we’d do it, she still wasn’t sure. I think because, I think she thought it would be more involved than it actually was. I think she thought they were asking more of her than they actually were. And really they were only asking, every time we went to clinic, to fill this form in and that was it, there was nothing else to do. I think she thought things were going to come to her house and she’d have to give up her time and do it that way. But it, no, it wasn’t like that. So I think she was surprised really.

 

Did you make the decision there and then?

 

We did, yes, did, definitely, yes. Because I didn’t see that there was any loss in it really to say, “Well, yes, we’ll do it” you know. It’s anonymous, it was, there was no, there was no, and if we changed our mind three months down the line we just didn’t have to do it. 

 

You just try and think of ways to support other people really. And if there’s any, anything that they want to know and they’re not getting any help with, then... I don’t know whether it helps or whether it doesn’t. But you feel like you want to try anyway, if nothing else.

 

And, and Chloe was happy with that?

 

Chloe was happy, yes. I think she looks for me. If I feel happy, then she’s fine, you know. If I have doubts, then obviously she’s got a, she tends to follow me really. And if I feel like I’m all right doing it... And she’s not daft. She knows why, you know, why we do these things and why, you know, I was saying yes. And she’s quite happy then to sort of do it as well.

 

Kathryn wanted to enrol her daughter in a trial to try and make things better for her, but also...

 And you feel like you want to do everything you can for your child. So that’s why you end up doing it. Because you think it’s going to benefit her. And that’s probably why I agreed to do it. Because I’d do anything to sort of make things better for her personally. But the more I thought about it, it’s not going to do, change anything for Chloe. Whether it does for other kids, I should hope that’s what it’s going to do. But I don’t know it will, because I don’t quite know what they’re doing with it. [laugh] But that’s why I would have decided to do it in the first place, because of, because of her. That’s why I would have said yes straight away. Because you’re doing it because you try and make things better for her, definitely. And anything you can do as a parent, you do it, don’t you?

 

Because the reason, the way we got invited this time, because we’d already done one with one of the nurses, and when we finished that one, that’s when she came to ask us about this one really to see if we was interested in doing another one. It wasn’t a nurse actually from the hospital, it was a nurse, do you know? and I can’t remember her name. So it was a nurse that doesn’t actually work there and I can’t remember her name. And because we were so keen to do that first one, because I think, as far as I’m concerned, and I think Chloe feels the same, anything we can do to help anybody else with the diabetes and how she feels and I feel, I think it’s, we’ll do anything. You know what I mean? Because there’s not enough information, I don’t think, out there really. And I, we find that now, after three years of being diabetic, there’s not enough information. People don’t really know enough about it all, especially with the Type 1. And, and I’m just quite happy to sort of have in, as much information as we can really. Because she just came to us and said were we happy to do… you know. It’s up to us, our decision. But, “Are you happy to do it?” And we just said, “Well, definitely, yes, yes, definitely.” There was no sort of hesitation in it really. Yes, because, you know, like you say, you’re quite keen to help anybody really to find out more about how everybody else feels and what, any help you can do really.

 

Kathryn is unsure what will happen with all the information she and her daughter gave to the...

Because obviously they’re going to have to do something with this information, aren’t they? Otherwise it was pointless doing it in the first place, wasn’t it? So then if it is something to write up for the children to read, then, yes, it would be helpful, wouldn’t it? If that’s what they’re, doing with it. To say, “Well, you could be feeling like this, but don’t worry. So are other children of your age group.” I should hope that’s how they were going to use it. Because if Chloe could have got given something like that, “Don’t worry. You might be scared. You might feel this way or that way. But this is how these other children feel as well.” But I’m not really sure in what way they’re going to use it really.

 

And I haven’t. So now that we’ve had this talk, I feel a bit, well, I’ve left it up in the air really and I don’t know anything more about it. And, and it’s sort of got you thinking a bit really about that I should have found out a bit more at the end really or whether I should have been told a bit more about what’s going to happen with it.

 

Yes, because otherwise you feel like it was a bit pointless otherwise, don’t you? “What did you do it for?” “Why did you sit there?” Yes, it was only a questionnaire form, but there needs to be some end result, doesn’t there? Otherwise it was all a bit, “Why did you do it?” Really, there was no point to it really, unless you know why they’ve done it or what they’ve got out of it really, is there?

 

Kathryn's mind was on the questions she wanted to ask the doctor, so she would have liked more...

 Just to give you a bit more time, I suppose, to think about it. Don’t expect to give it you, to, an answer on that day. And give you a bit more written information rather than verbal. And just a bit more time, even if you’re just sending it through the post, just give more time to think about it and read it. Yes, definitely, because I, and I’m not, I suppose I’m not alone, I don’t take a lot in just by being talked at. I do need to, definitely to read it and think about things. And, yes, I would have probably still done it. But I might have remembered it a bit more [laugh]. Well, it is and because you are there with your child and you are in that environment of where you’re going to check up how she is, your mind is at other places. Especially over the year where she’s not been 100 per cent and she’s only just in the last like three, four months got on a good level with her blood sugars. So the, at the beginning of that trial I probably was a bit like, my mind was probably somewhere else. Because I did have a lot of questions to ask, but not her, ask the doctor. So your mind is somewhere, so you probably don’t take it in like you should really. Whereas if you get a piece of information to take away, it doesn’t really matter, does it? Because you can read it at your leisure then, can’t you? And then, because my husband wasn’t there for, for any of them, because he struggles to get, you know, to these appointments. And then you’ve got time to discuss it with your partner as well then, haven’t you? And then it gives, because you sort of feel like you’re putting your child on the spot really as well, if I’m honest, because they wanted a decision there and then. Whereas if, if you go away, yes, you still probably would anyway, but it just gives her a bit of time as well, rather than just me. It gives her a bit of time to think about it as well, doesn’t it? And you talk to her as a family really then, don’t you? And what you, what you’re doing it for and what you expect to get out of it. Whereas I think until talking to you I’ve not really thought of it like that, not at all. We just did it, you know, answered the questions as best we could. And then when it finished I just, it finished. I never give it a thought after that. I think that it’s wrong that I thought like that, if I’m honest with myself. It’s wrong that I thought [mhm] until today. “What have they done with that?” I’ve not thought that at all, not at all. I mean she were a lovely nurse, really nice lady.