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John - Interview 07

Age at interview: 35
Brief Outline: John's daughter Chloe was recently admitted to hospital due to a spell of poor health. During this time he was invited to enroll Chloe onto a clinical trial' Control of Hyperglycemia in Paediatrics to which he and his wife agreed.
Background: John is married with four children. John left full time employment to become a full time carer to his daughter Chloe who has cerebral palsy and global developmental delay and his remaining children. John describes himself as White British.

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 John is married with four children, and left full time employment to become a full time carer to his children. John’s daughter Chloe was diagnosed with cerebral palsy at birth and later global developmental delay. Chloe has experienced spells of poor health requiring hospitalisation since birth. During a recent spell of poor health and being admitted to hospital, John was invited to enrol Chloe onto a randomised clinical trial called Control of Hyperglycemia in Paediatrics (CHIP). A similar study in adults had found that by keeping a very close monitoring of blood sugar levels increases recovery rate for those in Intensive Care. The purpose of the CHIP trial was to replicate this procedure in children admitted to Intensive Care. John was approached by doctors at the hospital. He says that the information sheets he received were ‘excellent’ and very detailed. He was asked to take the information home and discuss it with his wife before making a decision. The doctors also made themselves available to answer any questions. In addition, a nurse also spoke with John and went through all the necessary details of what was involved in the trial particularly for Chloe. They randomly selected whether Chloe would receive normal or tight control. Chloe was in the tight control group. 

 
John is supportive of clinical trials, he says that ‘if you can put a process in place that means that, you know, other kids that go through the same course of events are here for less time and their time is more comfortable then that’s got to be a benefit’. The treatment was not intrusive to Chloe and in fact it meant that the medical team would be keeping a closer eye on her. Chloe is now in the follow-up stage which means that John will complete a diary over the next 12 months when he will also receive a one off questionnaire. John’s advice to other parents that may be thinking of enrolling their child into a similar trial is to ‘ask questions’ and don’t be afraid to ask. 
 
 

John’s daughter took part in a trial to monitor blood sugar levels in children in intensive care....

John’s daughter took part in a trial to monitor blood sugar levels in children in intensive care....

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 I mean we weren’t offered into the CHIP Trial [Control of Hyperglycemia in Paediatrics] until the second bout of being in hospital really so, we came home, had a week and a half at home, started to deteriorate again, back into [hospital] which was quite straight forward at the time. She was in for a week suffered a massive cardiac arrest, shut down for six minutes completely, back into Intensive Care again. Doctors weren’t too sort of positive to begin with. She seemed to be, sort of struggling to, to maintain blood pressure etcetera, etcetera. So really about as poorly as you could possibly be I guess, at the time. Because she was intubated so on a ventilator, there’s a number of hospitals across the U.K. that are running this CHIP Trial. The idea being that in adults of a similar survey for want of a better term in adults, and they found that in adults if you, if you maintain a very close observation on blood sugar levels and maintain that very tightly as opposed to let it go quite a broad way before giving insulin, it increases the recovery rate. So they recover from Intensive Care much quicker. So we were approached by the doctors to consider whether we wanted to put Chloe forward to be a part of that trial. 

 
Nurse from the CHIP Team came in, went through with the Intensive Care nurses in terms of what they needed, needed to do with her. She only really needed I think two lots of insulin because she was doing quite well anyway. But they had two ways of doing this, they randomly select whether she’s going to be on tight control or normal control. They came back and they said she would be on tight control. Then she came out of Intensive Care. They did a follow up with her on, back on HDU ward, High Dependency Unit, and, you know the nurses since then maintain contact to check on how Chloe’s been doing. Unfortunately she’s deteriorated again; decided she wanted to go back into Intensive Care again, possibly because she got some addiction to Midazolam. I think she’s in love with it; I’ve got a vat of it here for when she comes home eventually. But I mean the information supplied was excellent, you know the support from the doctors and the nurses involved was, was superb. And the plan now is to do a follow up progress, really to keep a diary for the next twelve months on, whether she has any medication, what medication she has is for, if she’s back in hospital for any reason. And they’ll send us a questionnaire in twelve months in terms of how she’s been in herself, how she’s been medically. What intervention she’s needed if any, what our thoughts are etcetera. It seems to be quite detailed, well thought out, well prepared, well put forward. 
 
 

Although there can seem to be lot of information to read, it can be essential if this is your...

Although there can seem to be lot of information to read, it can be essential if this is your...

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 They came in and spoke to me. The wife at the time wasn’t around so, he thought it best that like at least discuss it with her before saying “Yes, fine”. Gave us an information sheet which is quite detailed obviously, I’ll give you a copy of that, which answered any questions, he was on hand every sort of twenty minutes saying “Is there anything you want to ask us? You know is there anything you are concerned about?” Read through the information he gave us, within about an hour signed it over.

 
So you’ve had plenty of information?
 
Oh God yeah.
 
And plenty of opportunity to ask questions?
 
Yeah, if anything from my point of view it’s probably information overload. But, I guess if you haven’t got a child that’s being in and out, in and out of hospital and with underlying conditions anyway then it’s probably exactly what you need.
 
 

Health professionals’ care in approaching parents and providing plenty of information may be...

Health professionals’ care in approaching parents and providing plenty of information may be...

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 Well I think what would probably make life a little bit easier is for people to stop being apologetic for what they’re trying to do, because they almost come across as like you know “Really sorry to ask you this” you know and they’re almost afraid to ask, you can see when they’re coming in to do it that they’re afraid to ask the question because they think “Oh, they’re in a traumatic time” you know. And the feedback from the nurse that was running the CHIP trial at [hospital] is “You know I wish more doctors would get would ask parents to take part, I wish more doctors would actually get on board with it” and I think they’re almost afraid to do that because either a) it gets in the way of what they’re trying to do or they think it will or they’re afraid they’re afraid of what the parent might say. You know just get on with it almost.

 
I suppose they deal with so many parents every day, like you say
 
Every parent is different etcetera.
 
and you have a lot of experience which, and some may not have so maybe 
 
Yeah, I appreciate that but when you’ve got when you’ve got somebody coming in to ask you to do something they’re almost building that apprehension up by “Really sorry, I don’t like to press you, you know would you like some time to think, you know, I’ll leave you, I’ll give you, read that” stepping they’re almost leaving information, stepping away as if to apologise for what they’re doing and it’s well just ask the question. Tell me what it does and you know, yeah its fine, if I have any questions I’ll ask but.
 
 

John has enrolled his daughter in various trials over the years. As long as there is no...

John has enrolled his daughter in various trials over the years. As long as there is no...

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 You know from their point of view I think you know it could be quite useful, moving forward. Our thought process at the time was basically you know, if it can put a process in place that means that you know other kids that go through the same cause of events are here for less time and their time is more comfortable then that’s got to be a benefit to all, you know. It’s not, it wasn’t ever going to put Chloe in any detrimental impact, you know all it could do really would be to keep a closer eye on her as opposed to a less involved care if you like I suppose. But I guess at the end of the day if the medical world was perfect you wouldn’t need research and trial and errors and so forth. 

 
Yeah, basically they put Chloe’s details into their database on the computer and it just churns out which one she’s going to be on, it’s not you know it’s kind of like just putting a bunch of stuff in a hat and picking one out and going “Yeah, that’s it then”. So it’s fairly straight forward, it’s not rocket science really. 
 
Well I mean normal control, they let the blood sugar level go to about I think they said eight or nine. Whereas with the tight control it’s, they’re looking at the blood sugar being at something like four or five. So it’s a lot, lot closer. But at the end of the day if it was a normal, well that’s not going to be any different to the treatment she would have had if this trial existed or didn’t, so either way it doesn’t really make a great deal of difference, because you don’t know whether the benefit is there of whether it isn’t. So if you don’t know, you’re not changing anything by leaving it on normal control because that’s what they’d normally do anyway. 
 
Yeah, no, definitely, yeah, no, I mean everything was gone through in quite a bit of detail. More detail than probably than we really wanted. It was “Do you want to do this? There’s no impact on Chloe as such”, fine, knock yourself out. You know, we’ve done a couple of couple of trials on various things with Chloe over the years and you know, I think at the end of the day you know, with the way you know the NHS works and the problems they have where funding is concerned etcetera, anything that’s looking at progressing things further forward and making life easier for everybody in the future has to be worth looking at. That said if they started saying “we’re going to take a lung and you know have a look at that” then that’s a little bit more of an issue isn’t it. You know because if it’s just let’s take these readings, have a look at it and analyse it then there’s no harm being done. 
 
 

Continued monitoring of your child’s health is an important part of the trial. John knew what to...

Continued monitoring of your child’s health is an important part of the trial. John knew what to...

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 And the plan now is to do a follow up progress, really to keep a diary for the next twelve months on, [um. um] whether she has any medication, what medication she has is for, if she’s back in hospital for any reason. And they’ll send us a questionnaire in twelve months in terms of how she’s been in herself, how she’s been medically. What intervention she’s needed if any, what our thoughts are etcetera. It seems to be quite detailed, well thought out, well prepared, well put forward.

 
Yeah, I mean as long as she was intubated then she was on Chip Trial. So about a week and a half later she was exubated and once she was exubated they take a snap shot of all her readings, blood gas, blood sugar levels, CRP levels, blood oxygen levels etcetera etcetera. And the idea is to compare that to when she was first on the trial across the stages to the end. And that’s it, job done. Obviously from a personal point of view they wanted to follow up with her to make sure she was okay, you know the doctors and nurses who had been dealing with her during the trial kept popping their head through the door to see how she was doing so you know very impressed overall really.
 
And the follow up, that’s sort of going to be you’ll get a questionnaire or something?
 
Yeah, yeah. They’ve given us a copy of everything that we’ll receive already. So, again I’ll show you that, it’s just basically you know ‘Thanks for taking part, this is the next stage, this is what we are looking at doing, can we ask you to keep a diary, this is the questionnaire that we’ll be sending to you to so you at least know what to expect, if you would be kind enough to send it back to us we’ll send it to you in a year’s time that would be great’. 
 
 

How researchers approach parents when asking them to enrol their children in a trial is important...

How researchers approach parents when asking them to enrol their children in a trial is important...

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 Well I think what would probably make life a little bit easier is for people to stop being apologetic for what they’re trying to do, because they almost come across as like you know “Really sorry to ask you this” you know and they’re almost afraid to ask, you can see when they’re coming in to do it that they’re afraid to ask the question because they think “Oh, they’re in a traumatic time” you know. And the feedback from the nurse that was running the Chip Trial at [hospital] is “You know I wish more doctors would get would ask parents to take part, I wish more doctors would actually get on board with it” and I think they’re almost afraid to do that because either a) it gets in the way of what they’re trying to do or they think it will or they’re afraid they’re afraid of what the parent might say. You know just get on with it almost.

 
I suppose they deal with so many parents every day, like you say...
 
Every parent is different etcetera.
 
...and you have a lot of experience which and some may not have so maybe?
 
Yeah, I appreciate that but when you’ve got when you’ve got somebody coming in to ask you to do something they’re almost building that apprehension up by “Really sorry, I don’t like to press you, you know would you like some time to think, you know, I’ll leave you, I’ll give you, read that” stepping they’re almost leaving information, stepping away as if to apologise for what they’re doing and it’s well just ask the question, tell me what it does. Tell me what it does and you know, yeah its fine, if I have any questions I’ll ask but.
 
 

John has enrolled his daughter in various trials and would consider other trials depending on how...

John has enrolled his daughter in various trials and would consider other trials depending on how...

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 Yeah, yeah, but obviously depends what it is. You know, like I said earlier if we’re looking at taking a lung then you know whatever then that’s a different kettle of fish. But as long I guess as long as it’s minimally intrusive not likely to have any have any detrimental impact or effect on her then yeah, no problem. 

 

John’s daughter is part of a research study that involves yearly monitoring of his daughter’s...

John’s daughter is part of a research study that involves yearly monitoring of his daughter’s...

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 I mean essentially the other main one really is the it’s been run out of [hospital], which is where she had the heart surgery when she [Ding] was born. That really is, apparently we signed up to that when she’d had the heart surgery but I can’t remember doing it. [Right] But that was quite a few years ago. Basically every, I think it’s every five years they ask us to go down to [the hospital]. Basically for her to have a MOT, just check her over completely, look at her progress to see essentially how children that have had that type of surgery progress, if there’s any long term side effects that that need to be monitored, made aware of, looked at etcetera.  So essentially just checking her progress, checking every aspect of her, they ask us a load of questions in terms of how she is, obviously again with Chloe with the global developmental delay side of things that causes its own string of questions. So we’ve only been back for that one once now, which was about eighteen months ago I think.

 
That’s an ongoing thing?
 
Yeah that that will be now, yeah for every sort of five years. They have an overall review of her to see how she’s doing and check on her heart so they do an ECG, they do a heart scan see how that is and that’s on top of obviously the cardiology appointments she has every, every six months. But again it’s no drama, it’s a day out of your life isn’t it, it’s not a day out of your life every five years it’s nothing, you know in the scheme of things and you know, thinking back to what we were, you know obviously we’ve had a lot more experience of hospitals and the processing in place and so forth since then. But think back nearly seven years ago when she was having that done, we were properly weepy parent by the bedside, you know, what, didn’t ask any questions, didn’t really get involved, it was just you know, emotion constantly and all the rest of it and I think you very quickly learn that you need to change from that.
 
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