Tina - Interview 05

Brief Outline:

Tina saw an advert in a local newspaper looking for volunteer children aged between 2 and 12 years to take part in the swine flu vaccine trial. She spoke to her two youngest children who were keen to find out more, which they did, and then they took part in the trial.

Background:

Tina is married and mother of three children aged 9, 11 and 18 years. Tina is a self-employed Management Consultant and describes herself as White British.

More about me...

 Tina is married and mother to three children 9, 11and 18 years. Tina saw an advert in a local newspaper looking for volunteers, children aged between 2 and 12 years, to take part in the swine flu vaccine trial. The purpose of the trial was to determine if two vaccines being tested should be given as a single or double dose. Tina spoke to her two youngest children who were keen on knowing more about it, so they checked the website, rang the number provided and booked into the first session. The first session was a Saturday morning so a convenient day for them. They met with a doctor who explained the purpose of the trial, about the two vaccines being used, possible side effects and of preliminary results of earlier trials in Europe, particularly regarding safety and success. Both children were asked by the doctor if they had understood about the trial and what it involved, which they did, and so both children agreed to take part. At this point they were randomised into one of the treatment groups and then moved onto the next stage of the trial. The next stage involved taking a baseline blood sample. Tina’s son aged 11 years was fine with this. However, her daughter, aged nine years, showed a little anxiety. It transpired that she thought they were going to ‘scoop it out with a spoon’. This was because the nurses had said they were only going to take a teaspoon of blood. After seeing her brother survive the blood test, and speaking with her mum, her daughter went ahead and had the blood test too. Tina said that both her children had found it a positive experience and would be keen to do something similar again in the future.

Tina enrolled her two children in a swine flu vaccine trial. The vaccine had been tested in...

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 Okay, well I saw an advert in the local newspaper looking for volunteers, children aged between two and twelve to take part in the swine flu vaccine trial. I spoke to my two youngest children who were keen on knowing more about it. So we followed, we rang the, checked the website, rang the number they got booked into the first session which I think was late on a Saturday afternoon, so pretty convenient. It was very good timing, it fitted with our other stuff. We came along to the [hospital] which my son knows quite well from various accidents and other medical events. And they told us to expect to be there for about two hours. We got there did not have to wait too long at all. The first session was with a doctor who took us through the purpose of the trial, the fact that there were two potential drugs being used, explained that they‘d been trialled in mainland Europe and that the preliminary results were that they were very safe and been very successful, and the trial was about understanding whether they should be given single or double dose, that it was random sample, but the two children would, had randomly been giving one each so we’d have both.

 
Talked through the expectation of another two visits, potential, any potential side effects, although the likelihood of that was very low. The children were asked if they understood which they did. We then went to a second session which was going through medical history, again pretty straightforward, no issues at all with either children. Our only issue was we were due to go on holiday at the end of the second, after they’d had the second dose and I just needed to check that that fitted... and that they had, had to have vaccinations for that, and just again a little bit of, I guess questions to whether that made the trial valid or not. 
 

Tina's children had the final decision in whether they wanted to participate in a swine flu...

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 Yeah. And you think it’s important also because you mentioned to talk to the children about it so it’s very important you think to make sure they’re involved in the decision.

Oh, absolutely. I mean we said to them that if either or both did not want to do it then fine. And we told them we thought it was important to have the protection but ultimately they had to be happy with it and understand why. So yes, I mean yes; I think, you know, they needed to understand what swine flu was; they needed to understand what a vaccine does. They needed to understand a little bit about what that meant. And in some ways I mean I guess I suppose with our youngest daughter she may have known too much, because I think she knew that blood tests are going to take some blood out. I think that probably, the reality was very different to her fear that you know I think she, she thought they were going to scoop blood out somehow and so I think we should probably maybe either have been completely clear, well been completely clear in one way or another.
 
Yes. Well because she does say, she said “I thought they were going to spoon it out”, because I think that’s what they said to her was “We are only going to take a teaspoon”. And her image was [suggestion of spooning blood out of arm], yes.
 

An added bonus for Tina's children who took part in a swine flu vaccine trial was being involved...

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An added bonus for Tina's children who took part in a swine flu vaccine trial was being involved...

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 I think it was because there was a lot of chatter in the press that swine flu was going to be a big issue. They, they were obviously in a you know, in a risk group being at school; my son does tend to get things and he keeps them longer than anyone else and so you know, and clearly it was a way of giving them early protection. So it seemed like a sensible thing to do, and to give them sort of, obviously, an insight into a process like this.

 
I think it was we had, we had told the children that you know obviously they had final call but it was something we wanted them to do. And absolutely, we wouldn’t have forced her to go through but we did say to her that she’d gone so far through the process, that it was silly to kind of step away from that. And also the one of the major reasons was we did want her to have the vaccine. So if it stopped her having the vaccine, then she kind of really needed to be sure that she absolutely couldn’t, and you know I said after persuasion and her being able to sort of sit and think about it, she was happy to go ahead. 
 
No, other than to say that I do think it was positive for them. I think it’s been you know, it’s kind of gives them an insight into how I guess medicine moves forward. And I think you know it’s, it is a very positive thing for children to be involved. And yes they would certainly think about doing it again.
 

It was explained to Tina that the vaccine had already been trialled in Europe and that they were...

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 Okay, well I saw an advert in the Oxford Mail looking for volunteers, children aged between two and twelve to take part in the swine flu vaccine trial. I spoke to my two youngest children who were keen on knowing more about it. So we followed, we rang the, checked the website, rang the number. They got booked into the first session which I think was late on a Saturday afternoon, so pretty convenient. It was very good timing, it fitted with our other stuff. We came along to the [hospital] which my son knows quite well from various accidents and other medical events. And they told us to expect to be there for about two hours. We got there did not have to wait too long at all. The first session was with a doctor who took us through the purpose of the trial, the fact that there were two potential drugs being used, explained that they‘d been trialled in mainland Europe and that the preliminary results were that they were very safe and been very successful. And the trial was about understanding whether they should be given single or double dose, that it was random sample, but the two children would, had randomly been given one each so we’d have both.

 
Talked through the expectation of another two visits, potential, any potential side effects, although the likelihood of that was very low. The children were asked if they understood which they did. We then went to a second session which was going through medical history, again pretty straightforward, no issues at all with either children. Our only issue was we were due to go on holiday at the end of the second, after they’d had the second dose, and I just needed to check that that fitted, and that they had, had to have vaccinations for that, and just again a little bit of, I guess questions to whether that made the trial valid or not.
 
Well I said it was responding to an advert in the Oxford Mail. So, it was, they were asking for people. We responded saying we do fall into that sort of demographic and it was pretty comprehensive, it kind of explained in outline what was going to happen. So it seemed pretty straight forward.
 
So they sent you information?
 
Yes, yes, yes.
 
Yeah, and were you able to ask questions? 
 
Yeah again there was a website with a question line and yes, I mean our only questions really at that time were around would it be valid with us going away on holiday and just setting up appointments. So yeah, we found it pretty, it answered all the questions that we had at that stage, yes.
 

Before giving consent for her two children to take part in a swine flu vaccine trial, Tina...

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Before giving consent for her two children to take part in a swine flu vaccine trial, Tina...

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 And just going back to that again, is, is, when you saw that, can you tell me perhaps why you think you were consenting for your children to take part in the trial.

 
Again, I think it was because there was a lot of chatter in the press that swine flu was going to be a big issue. They, they were obviously in a you know, in a risk group being at school; my son does tend to get things and he keeps them longer than anyone else and so you know, and clearly it was a way of giving them early protection. So it seemed like a sensible thing to do, and to give them sort of, obviously, an insight into a process like this.
 
That’s interesting. And did you talk about it with anybody or did you just make that decision?
 
I obviously talked to them to the children because they understood both that it was a piece of research and that it would give them protection. And as I say they were pretty keen on seeing what it was all about. And yes obviously discuss it with my husband as well because vaccine, because with my daughter, she was MMR, right in the middle of that. And so we did go for single doses with her because we were, weren’t sure actually what the, you know, where that one was going to pan out. So giving them vaccines isn’t something that we would do lightly.
 
You know it’s because it’s not you, it’s someone else. And they although they agreed it’s the long term things you don’t know about.
 
Yes, exactly.
 
Yes, so, it is quite a big decision.
 
It was yes, absolutely you know and we wanted to, and we were balancing the risk of them having what sounded like a very nasty virus with giving them early protection. So, and again all the data seemed to show that this was not an experimental drug, it had been used in adults, it had been used in mainland Europe. It was just simply trying to work out whether either of them was more effective than the other and whether there would be any different reaction in children in this age group. So, it was, it felt like a very controlled risk.
 
So the level of risk was important?
 
Yes, yes. And also I think the fact that it was this was not an experimental drug, it was just being used in a different way, in a different age group. It was yes, absolutely you know and we wanted to, and we were balancing the risk of them having what sounded like a very nasty virus with giving them early protection. So, and again all the data seemed to show that this was not an experimental drug, it had been used in adults, it had been used in mainland Europe. It was just simply trying to work out whether either of them was more effective than the other and whether there would be any different reaction in children in this age group. So, it was, it felt like a very controlled risk.
 

Our daughter couldn't understand how they were going to take a teaspoon of blood.

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Our daughter couldn't understand how they were going to take a teaspoon of blood.

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 Oh, absolutely. I mean we said to them that if either or both did not want to do it then fine. And we told them we thought it was important to have the protection but ultimately they had to be happy with it and understand why. 

 
So yes, I mean yes; I think, you know, they needed to understand what swine flu was; they needed to understand what a vaccine does. They needed to understand a little bit about what that meant. And in some ways I mean I guess I suppose with our youngest daughter she may have known too much, because I think she knew that blood tests are going to take some blood out. I think that probably, the reality was very different to her fear that you know I think she, she thought they were going to scoop blood out somehow and so I think we should probably maybe either have been completely clear, well been completely clear in one way or another.
 
Yes. Well because she does say, she said “I thought they were going to spoon it out”, because I think that’s what they said to her was “We are only going to take a teaspoon”. And her image was [suggestion of spooning blood out of arm], yes.
 
Yes. I mean I think again I mean I suppose that would be one thing that the standard patter was pitched at the parent not at the child. And I think that’s great. If there were a reason to change it then maybe yes, because you know it was, you know, fifteen, twenty minutes of the children just going [facial expression] [laughs]. It might be, and they were interested, it might be, that might be a useful bill to give to have given them something that was you know more at their level. 
 

Tina says that having good information and being able to ask questions would certainly make a...

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 Yes, definitely. I mean definitely, I mean I thought the information was very good. I think that there is the opportunity to ask questions. I thought that you know if you like the, the patter that we were given about the origin of the vaccine, the way that it had been used up till then and the potential risks were very clear. And I, and I also felt that had we wanted to explore that in any more detail or ask more questions, then the medical staff would have been happy for that and would have been able to answer questions. So yes, I mean I think it is a yeah, it was a very positive thing.