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Lena - Interview 20

Age at interview: 44
Brief Outline: Lena consented for her youngest child to receive the swine flu vaccine as part of a clinical trial. This was at the time of the pending epidemic. Lena supports clinical research in general.
Background: Lena, aged 44 years is White British and married with three children ages 11, nine and two years. Lena works part time as a child-minder. Lena consented for her youngest child to receive the swine flu vaccine as part of a clinical trial.

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 Lena is married with three children ages 11, nine and two years. Lena works part time as a child-minder. Lena consented for her youngest child to receive the swine flu vaccine as part of a clinical trial for children under the age of three years.

 
Lena took part in the trial at the time when there was a lot of media panic. She initially received a letter from her local health authority. After discussion with her husband and looking at the information they had received and doing a bit of research on the internet, they decided it would be a good thing. Apart from the concern about swine flu, Lena was reassured to take part because it was testing which vaccine was going to be the most effective for young children rather than trialing the vaccine. So both vaccines were safe and had previously been tested, they now were looking at which one was the most effective in young children. So together they considered it was safe for their daughter to receive the vaccine and at the same time get protection from swine flu. As Lena says, she would have received the vaccine at school anyway, but taking part in the trial meant she would receive it a bit earlier.
 
The trial involved three appointments with a month interval between each one. Although after the second appointment and jab her daughter was quite poorly with a very high temperature. At the time Lena did think “What have we done?” However, it only lasted 24 hours and they felt that if she had caught swine flu, it may have been worse. They recorded everything down in the diary they had to keep of any changes in behavior and health during the period of the trial. Soon after the third appointment, she received notification that her daughter had immunity against swine flu.
 
Although Lena doesn’t know which vaccine her daughter had, the information they received was very clear about the vaccines and the drug companies involved; both of which they were familiar with. However, Lena said that if they had not known the drug companies then they may have asked more questions and wanted more information before consenting. Lena is supportive of clinical trials in general. Lena felt that the clinical team was very open and that she could trust them and that they were able to withdraw at any point during the trial. 
 
In terms of improving the experience, Lena suggested that the appointments could have been at her local surgery rather than travelling to the hospital which was 15-20 miles away. Although this wasn’t a problem, it may have acted as a barrier for other parents who didn’t take part. 
 
In giving advice to other parents who may be thinking of taking part in similar trials Lena says that you must get as much information as you can. She suggested talking to the health visitor but to go with your own gut instinct on what you think is right for your child. 
 
Lena supports the ideas of health children taking part in such trials in order to help advance science.
 
 

Sometimes the maternal instinct to protect your child plays a part in wanting to enrol them in a...

Sometimes the maternal instinct to protect your child plays a part in wanting to enrol them in a...

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 Well I, just because the, you do listen to the, what’s on the news and read the papers, and you, and you just think is it really? And we had some friends who, she was pregnant and she’d taken the Tamiflu was it? I think it was Tamiflu it was called. And she’d actually miscarried. So we knew that it was quite a serious, a serious flu bug. Whether it, I mean it actually transpired it wasn’t as bad as they thought it was going to be, didn’t it really? But I mean healthy children were obviously becoming quite ill with it, and we thought well she would have had the actual vaccine, so we were happy for her to have the vaccine early is the way that we looked at it. Like I said my other children wanted it as well. They weren’t invited.

 
And do you think that fear thing is a big trigger as an incentive?
 
Well I think it’s a survival thing isn’t it, you want to look after, and a protective, you want to protect your children. And you do that in whatever way you can, you know, and we wanted to protect our youngest because she was in the most vulnerable age group. You know, so, that’s why we did it. 
 
 

At the end of the trial, knowing her daughter had immunity to swine flu was important to Lena.

At the end of the trial, knowing her daughter had immunity to swine flu was important to Lena.

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 No, no, I think, I mean because the trial, like it was quite a while afterwards the results took to come out. But I remember phoning up and saying was she covered by the swine flu because we hadn’t heard. They’d given us a date, I can’t remember what the date was, they’d given us a date and said that you should hear by this date. And I’d contacted them and said, “We haven’t heard.” And they said oh it’s because, I think the postal strike, there was a postal strike on or, so they said “We will contact you.” And they did contact us. And then they phoned again to check that everything was okay. So it was; they were very informative. Yeah.

 
And in terms of the study overall, have you had any results to say which drug you know, if there was any mention of this?
 
No I didn’t, I didn’t really think I wanted to find out whether she had the drug that, because, because it had worked for h and that she had an immunisation against it, then I didn’t really feel that I needed to know whether it was the drug that they’d used or not really. I, I’m sure I could have found out because, but I decided not to you know once...
 
You didn’t want to know any more?
 
No, yeah, yeah, definitely.
 
It’s interesting that sort of idea, not wanting to know. [Yeah.] If, if things hadn’t have gone so well, you might...?
 
Yes, yeah we were happy with the outcome. She was covered. She didn’t get swine flu. So we were happy that everything had gone the way that we wanted it to really. So we thought no, there’s no point really finding out whether it was the drug they didn’t use or not. Because both drugs had been trialled, it was just really as to which one they were going to use.
 
And if hadn’t have gone so well, would you have wanted to know?
 
Possibly would yeah. Try and find out more information. Yeah. Yeah. I think that’s with most things isn’t it, if things go well then you don’t need to look further. But if you’re not happy with something that’s when you dig deeper isn’t it really? I think.
 
 

If your child experiences side effects from a treatment as part of a clinical trial it is...

If your child experiences side effects from a treatment as part of a clinical trial it is...

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 Did you think, “Oh maybe I shouldn’t be doing this?”

 
No, no the only time we thought we shouldn’t have done was when she was poorly after her second dose. But that was only just when she had the high temperature so. No we didn’t feel that we should have backed out at any time really, no.
 
Yes, and even after the first, I mean at any point we could have walked away. If we decided that we didn’t want to go through with the second vaccine or and even the blood tests, when they couldn’t take the first blood test, they didn’t try too hard. I mean she was distressed so they stopped. They could have, they did, you know they weren’t pushy in any way and so once they couldn’t get the first blood test, they said, “Oh she’s distressed, we won’t do it.” And then the next time when she went to take the blood test, she was fine about it. But I think it would have been exactly the same if they still, if they, but they needed the blood really to see whether it had worked. But they weren’t they were very good with a very small baby.
 

 

 

Balancing the risks versus the benefits was important to Lena before giving consent for her...

Balancing the risks versus the benefits was important to Lena before giving consent for her...

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Right so from what I can remember she was up to date with all her jabs. And the swine flu, so the swine flu was just, everyone was just hearing about it, and starting to panic. Not me panicking as such, but it was there was quite a lot of in the newspapers, a lot of I don’t know. They were just drumming it up so it was sort of like scare mongering. So we got this letter from the from the Local Health Authority asking us if we were interested in joining our youngest daughter in the study, because she fitted the age group that was required, which was six months to I think it was four years. I don’t know if I remember correctly. There was different age categories but that was the only category that was required of us. My son who was 11 at the time was desperate to join the study because he was convinced that [he] was going to die of swine flu. But he wasn’t selected, much to his annoyance. 

 
But so my husband and I discussed it. We looked at the information that was sent to us, by there was an address to have a look at the information, and it was very informative. It wasn’t that we were actually being used in a trial as such, because they both, both of the vaccines had been trialled, they just needed to see which one was going to be the most effective for the babies. And obviously they wanted to, I don’t know what their procedure was but they just wanted you to check. So both of them were safe for children, it was which one they wanted to use. Perhaps the cheapest, or don’t know, the easiest available. I don’t know so. So we considered it was safe for her to do it, so which was why we agreed to do the study. 
 
 

The first appointment was long and quite hectic and Lena’s daughter didn’t like having blood...

The first appointment was long and quite hectic and Lena’s daughter didn’t like having blood...

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 She was the first appointment, quite a long one. Because you had to have a blood test taken, which she wouldn’t let them do, but it was, she could still go ahead. But they wanted to take a blood test, a sample to see whether she actually had an immunity against the swine flu already. But they couldn’t take that one, but they also then had to do to check her over that she was fit and well for the study. And then she had to have the first swine flu jab. And then we had to wait afterwards so a very long appointment. And as I said before that she, we, well we foster, and we had a newborn foster baby with us at the time, but, so it was quite hectic and it was very, very busy there, with lots of people. But the staff were really, really nice and the nurses were dressed in you know, bright coloured uniforms, and there was a television playing. But Matilda was a bit too young to actually appreciate, but I watched it. Well as much as I could with two babies, but, yeah, no it was very good. It was, they did a very good job, and they were very informative; lots of information, lots of help numbers. 

 
They gave us a pack which we had to bring home with a ruler, a thermometer, and a check list. We had to measure any redness. We had to take the temperature at certain times of the day over the next few days to see whether there was if they had a temperature, she had a temperature and to any difference in her behaviour at all. And the first; after the first jab she had, no change at all. There was no, she wasn’t affected at all in any way.
 
If I remember there was about a month interval between each, so it was October November and December that she actually had the three appointments. The second appointment, I can’t remember now what the second appointment was for. It wasn’t the jab. It was just a follow up I think. And the third time we went, no the second appointment, sorry, the second appointment she had her second jab. And there was no blood test on that one, just a jab. And she was when, she was fine when she had the jab but she was, when she, afterwards she was quite poorly with the jab. It really had, the vaccine had obviously, the second dose had really, and we did think, “What have we done? What have we done?”
 
But she had such a high temperature. It really was very, very high. But then we thought if she hadn’t have had the vaccine and she’d got the swine flu, what would her temperature have been like? How ill would she have been if she hadn’t had it done, so? And it only lasted 24 hours. And it was all recorded down and written down and we handed it to the, you know the staff. But we weren’t concerned enough to phone up, because we knew what was causing it, it wasn’t like she suddenly had a temperature and we had no idea. We knew exactly what it was, and that it was the vaccine that had caused the, the temperature. So it was a bit concerning but at least we knew what it was really.
 
And the third appointment we had to go, we had to put this little patch on her hand, and some cold cream. I can’t remember what that was for now. Oh that was because they were going to take a blood sample that was it. And they did manage to take a blood sample from her after the third one.
 
And yeah she was fine. She was fine with that. And that appointment was like really quick, in and out, no trouble. So, yeah, it was. And she’s been fine ever since. And of course they sent, sent us the notification that she was, she was, it had taken and she had immunity against swine flu. And then of course nothing really ever came of it did it really?
 
 

Lena put the expenses received in her daughter’s saving account.

Lena put the expenses received in her daughter’s saving account.

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 Yeah that’s why I’m saying, yeah I think he’d quite like that, well also you see we, not that we did it for that, because we didn’t know that. When we first, after the first meeting they said, “And obviously we’ll pay your travelling expenses for doing the trial.” So, and we said, “Well make it payable to our daughter.” And it wasn’t, it was, it was minimal, it was really just to cover the petrol and the parking. And our son said, “So she’s getting paid as well as that she’s not going to die from Swine Flu”. Oh is that all you think about is it. So when the cheque come through in her name he went, “Here we go.” Yes, tiny tiny amount, but yeah. [But it’s something.] Yeah well it did, I mean but they obviously wanted you there at, they didn’t tell you that at all in the beginning that’s what they were going to pay you, so it was only after you turned up after the first one, they said that we’ll pay you a small amount for your expenses.

 

Possible side effects of having the swine flu vaccine were explained in great detail. Knowing...

Possible side effects of having the swine flu vaccine were explained in great detail. Knowing...

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 And do you think because it was kind of very kind of low risk perhaps that’s one of the reasons perhaps you took part?

 
Yeah, because they’d already tested the drugs, it was just really to see which one they were going to use. And both of the names were names that we had recognised as leading drug companies. Even though we didn’t know which one we were with. We felt that it was safe enough for her to actually, because she, it was 50'50 whether she was going to have the one that was going to be trialled out, or used for every, all children, or, whether she was going to have the other one. So yeah, we felt it was safe enough for her to have.
 
So you weren’t aware which one she’d had?
 
You weren’t, you weren’t supposed to be aware, but if I remember correctly the two brands, one was a chemical which was like KB and one was a B. So we’d sort of get, worked out which company we’d were having. But not that they’d actually told us, it wasn’t difficult to work out. But not that either one of them meant you know much to us really.
 
Would it have made a difference if you didn’t know the drug company?
 
Possibly. I might have asked a few more questions as to whether they, if they weren’t going to tell which of the current drug companies were, then I think we would have probably wanted to know more information whether they, if they’d wanted to keep it anonymous, what are the, what do these drug companies do? What do they specialise in? What’s their track record really?
Yes definitely. But because they were one’s that we’d heard of and knew, and we could research on the computer then we were happy for her to go ahead.
 
 

Lena’s daughter experienced a high temperature and soreness after the second vaccine injection...

Lena’s daughter experienced a high temperature and soreness after the second vaccine injection...

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 Yes, yes. They went through, so that’s why when she had the side effects really badly we weren’t too, we were concerned, but we knew that, to expect them so, and I think it, perhaps it was a bit more of a shock because after the first vaccine she hadn’t had any side effects. There was no redness and it was, almost a bit of a, “Oh okay.” But not a let down, but okay, so she’s actually fine with all of this, you know. There’s all this, “Oh you must contact this, and this may happen, and this may,” you know they’d gone over everything to the nth degree, and there was nothing. So when the, it happened the second time we were like, “Oh right okay, well we must,” you know, you know, we had to record her temperature and how big her, the redness was on her arm and everything, so. But yeah, no she’s absolutely fine with it.

 

Having some tests and vaccine injections at your local GP surgery may save parents a lot of...

Having some tests and vaccine injections at your local GP surgery may save parents a lot of...

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 I couldn’t really see why it couldn’t be done at your local surgery as such; there were certain parts of it which could have been done locally to save you. Because it’s not that much of a journey, it’s 15 miles, but it’s still that time of year, winter time when you have to you know, pack up, and it would have been easier to have been done at your local surgery. But that’s just me being picky really.

 

Talking to others such as health visitors can be helpful but you need to go with your gut instinct.

Talking to others such as health visitors can be helpful but you need to go with your gut instinct.

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 I think the thing is, to check on as much information as you can. The information they send you. To talk with the health visitors, would be useful because they’re always a very good source of information and see how they feel about it. But you can only really go with your own gut instinct on how you feel. No-one else can tell you what you should do with your child. But if you’re in anyway thinking about it, then the actual, the experience we had was very good.

 

The vaccine had already been tested and they could withdraw at any stage of the trial.

The vaccine had already been tested and they could withdraw at any stage of the trial.

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 Yes I think you have to trust them. Because you’re putting your child’s, you know you’re giving your child a, a drug that you know nothing about really. So you do have to trust them that they are actually you know, above board, you know.

 
The fact it was evidenced already [Yes. Yes.] was important?
 
Yes, yeah. Yeah. That they weren’t actually trialling the drug, it was just trialling which drug, but yeah.
 
And it makes it’s important. [Yeah.] Do you think it’s good that healthy children are involved in sort of clinical trials?
 
Definitely, yeah, yeah definitely. Because as I’ve said, if you, my son wanted to do it because he was, I think he was worried about what was going to happen to him. But you, I think it; you can’t advance science unless people can help out on these things really. But again it’s up to the parent’s individual choice. And it’s only their gut reaction they can go with really. But we found that we could have pulled out at any time, so even if you start these things, you don’t feel, I wouldn’t, I didn’t feel trapped into it at any point that I had to continue if, we wanted to continue.
 
Having been through it you know, from your own experience, what would you want to ask that parent? Why did you enrol your child?
 
Yeah, I’d want to know what made them choose, decide to do it really. I think that would be, well why did you decide to go ahead with it. But for us that’s almost an easy question because it was the swine flu that everyone, it was on the news every night. The numbers of how many people were dying, or the number and the helpline and everything. It was, we felt that if we could help and help our daughter as well, then you know we had three children, at least if one of them was vaccinated then it was a start really so.
 
 

Lena would consider other vaccine trials for her children if there was sufficient information and...

Lena would consider other vaccine trials for her children if there was sufficient information and...

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 Yes, with as much information that we had yeah. We would want as much information. I mean I say yes, but you would obviously still look into it. It’s not something you, you know you just say oh yes blindly. But we would consider it again, yes.

 
If it had been in the early stages, when they really didn’t know much, and they hadn’t trialled it out with children, then I don’t know that we would have, because she was so, when they’re so young you’re making that decision for them, it would have, yeah I don’t that I would have necessarily have done it the same way really.
 
Well if the child was old enough to communicate, so just say if it had been my son who’d gone for the trial. And if he at any point had said, “I don’t want to do this.” Then, then we would have stopped really. So I think once you get to about four or five. When they can tell you they don’t want to do something, even if it’s because they don’t like the colours of the nurse’s uniform, it could be something really trivial, or, they don’t like the hospital or something, then you would stop. Because there’s no point in putting your child through distress just because you feel that, you know, even if you tried to reason with them, no I wouldn’t do that, no.
 
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