Karen - Interview 11

Age at interview: 29

Brief Outline: Karen enrolled her daughter in a clinical trial for a new Meningitis Vaccine. Karen supports such trials and understands their importance as people take it for granted that vaccines are available for children but that they are reliant on people trialling them.

Background: Karen is aged 29 years, married, mother of her two children and works as a full time Nurse. She describes herself as White British. Karen was invited to enroll her daughter aged 3 years in a clinical trial for the new Meningitis Vaccine to which she accepted.

More about me...

 Karen is aged 29 years, married, mother of her two children and works as a full time Nurse. Karen was invited to enroll her daughter aged 3 years in a clinical trial for the new Meningitis Vaccine.

 

Karen received the invitation for the trial through a letter from her Health Visitor. She believes that children of a certain age and in a certain area were randomly selected using health records. They received a ‘big’ information pack that explained everything about the trial, what was expected and what was involved. There were contact numbers to ring if they required further information and Karen took this opportunity to speak to a doctor. They were happy with the information they received and after discussing the trial with her husband they agreed to let their daughter take part. 

 

So far the trial has been straightforward. Eloise has had a blood test and injection. Which she coped really well with and Karen thinks that the doctor and nurse who came to see them were excellent. They are now keeping a diary of Elosie’s temperature and symptoms.’

 

Karen was motivated to take part in this trial for various reasons. Karen says that ‘we take it for granted that these things are available for our children, and someone at some point has to be brave enough to say “yes I’ll try it’.’ Another big influence is her youngest son has long term health problems and she knows realistically that he may have to have experimental surgery and medication, and the meningitis vaccine would be beneficial to him later on as well. The trial was convenient too as the procedures for the vaccination were all conducted at her home.

 

Karen is supportive of clinical trials in general; as it benefits everyone in the long term. On reflection, Karen felt that the amount of information she received was a bit ‘daunting’ and it took a week to digest it all; it was an eight page booklet.

Karen had no doubts about her daughter taking part. In terms of advising other parents, Karen says that she found it helpful to ring the contact number provided and speak to a doctor. Also she recognises there was no pressure for her to take part. She says that it was a very positive experience for her daughter ‘it wasn’t scary to her at all’ and it seemed like a game. Although a week after the injection her daughter said' “those ladies came and hurt my arm” and that was all she said about it. Overall Karen was impressed with the way it was conducted, and would happily consider doing it again for something else.

 

Karen was happy with the information although found it a bit daunting as there was so much to read.

I think the, the information that we got answered everything in the first place. You know we weren’t left asking much more so.

 

When you first got that sort of letter? What sort of response was it?

 

Yeah, to be honest I’m so, I was very confused because it was so soon after Samuel being ill, to get a letter that just said, “Parent or Guardian of….” And then from the University, my first thought it was him. And then you open it up. I was confused. And then I looked at the envelope and realised it was Eloise. It was daunting. I think the amount of information was, it seemed a lot all at once, and it took sort of a week to kind of read it, digest it, sleep on it, that kind of thing. It was almost a bit scary at first, but once you read it and thought about it, it was fine.

 

Was that because it was a lot of written information?

 

Yeah, I mean it was a sort of eight page booklet. [Was it?] And it told you everything.

 

It is a lot to read.

 

Yeah, it’s a lot to take in one go, but, but you know over the course of a week, because I showed it to my husband and he was very much, “Can you read it and tell me what it’s about?”

 

Because also they, there was quite a gap between that initial contact and the first appointment that they, they wanted so yeah, there was plenty of time to think about it.

 

Karen took responsibility for giving consent for her daughter, aged three years, to take part in...

 I wouldn’t say it really came into it because we didn’t, we didn’t give her an option. But then also when they came it was, it was a very positive experience the, it wasn’t scary to her at all. And it seemed like a game. And the fact that she got her sticker chart, and you know did all these things; she has to do certain things to get the stickers, and to her that’s, that’s on her wave length. And that’s kind of as much as she needs to understand, and yeah. And her impression was that they came to play with her. She said to me about a week later, “Those ladies came and hurt my arm.” And that was all she said about it. But other than that, she felt they just came to play and read books with her, that the injection and the blood test side of things was kind of a side line to her.

Karen knows from her nursing experience how important clinical trials are in helping improve care...

 Yeah. And I, I think also a big thing for me was that I always feel we take it for granted that these things are available for our children, and, someone at some point has to be brave enough to say, “Yes I’ll try it.”, I think another big thing, a few weeks before we got this invitation, [my son] was very ill, and he’s got long term health problems now. But we know he, realistically was going to end up with experimental surgery or medication, and stuff like that it’s kind of putting your back into the system as it were. Does that make sense? 

 

And things like you know the meningitis vaccine would be beneficial to him later on as well. Yeah. I think, I think he had a big influence in this as well. Yeah. I was going to say even, even if that hadn’t have happened we probably would have gone ahead with it. But I think it’s played a much more important role to us than was expected.

 

Karen says not to be daunted by the amount of information and there are always contact numbers to...

 I would say, “Don’t be daunted by that initial invitation.” And also it was stressed throughout the booklet that you’re able to ring and speak to someone, and I found that helpful, sort of cutting through all the reams and reams of paper and speaking to someone. And also there was no pressure. So, don’t be put off phoning them, even if you phone them and are still not happy that’s, that’s not a problem.