Ruth - Interview 01

Age at interview: 38

Brief Outline: Ruth received an e-mail at work inviting colleagues to take part in a clinical trial on the vaccine for swine flu for children under 3 years of age. Although Ruth is supportive of clinical trials in general she decided to decline.

Background: Ruth is married and mother of George aged 22 months. Ruth works full time in Higher Education and describes herself as White British. Ruth declined to enrol her son on a swine flu vaccine trial.

More about me...

 Ruth is married and mother to George age 22 months. Ruth received an e-mail at work inviting colleagues to take part in a clinical trial on the vaccine for swine flu for children under 3 years of age. Although Ruth is supportive of clinical trials in general she decided not to consent for her son to take part in the trial. This decision changed from initially being keen to enrol George to finally declining to enrol George. The initial interest to enrol her son was to prevent the family from catching swine flu, especially as her husband is asthmatic and one of the at risk categories. As George now attends Nursery they tend to catch everything that he brings home; all sniffles, colds, bugs and so forth. Ruth thought that by getting George vaccinated it could have prevented them contracting swine flu particularly as it was suggested that it was about ‘to kick off in a big way’. However, the change of decision occurred through a process of discussion with her husband and talking to family members and work colleagues. Ruth’s decision moved from a ‘selfish’ point of view to thinking more about George’s best interests. After making the decision Ruth felt very relieved and maybe “being a nicer person because I’m thinking of George first and not of ourselves.” 

Even though Ruth declined to enrol her son in a swine flu vaccine trial, she was satisfied with...

 It was an e-mail, it was an e-mail with various attachments of information which laid out first of all was; were you going to be eligible? So it was a sort of little quick questionnaire to see whether you’d be eligible, if you fitted the certain criteria and I think from memory the criteria were they had to be under three they had to have no underlying medical conditions that oh I can’t remember any of the others those are the only two I can remember off the information. But he did fit all of the criteria’s so I then went on to read all the rest of the information and it said it gave details about what the trial, what the trial was so the fact that they were testing two types of vaccine. So it wasn’t going to be something like a placebo trial you were going to get an active vaccine but it was either one vaccine or the other vaccine and then they were going to test the results between which one was more effective. And they gave information about what you would have to do, how many visits you would have to go and that, you know. You had to go over it was quite a few visits I think it was like six in all and various blood tests that they would take to measure the progress of the vaccine in, in George’s bloodstream to check whether it was effective or not effective. So yes I did feel that actually the information they gave was very thorough, I didn’t, you know, from that point of view as far as what bare bones of the trial was going to be and what it would involve I felt that that was fine and then very clearly at the bottom they had contact details for you to get in contact with them for further information and if you had any queries or questions. 

 

I suppose my only slight query would be that George was premature so I didn’t know whether or not they felt that might have been a risk factor. Actually he’s been perfectly healthy I mean he was a bit on the small side to start with but you know, he is perfectly healthy so I’d sort of discounted that in my mind but I thought well, you know, if I take it any further then obviously I’ll mention that to them to see whether or not I would still be eligible. 

 

So I did have a thorough look through the information that came through, they gave, or with the e-mail there was lots of attachments with the protocol and whether there were going to be, whether you’d be suitable, whether, you know, you could, you would match the criteria and all of that. And it looked like I matched all the criteria. I was interested in it.

 

Ruth thought enrolling her child in a swine flu vaccine trial might help protect her husband, who...

 I suppose, I mean, the main reason I was probably interested with the swine flu was because my son is 22 months and he, well as soon as he went to nursery we caught everything going, I mean, every little sniffle, cold, bug and I’m just and I just knew that if swine flu was going to kick off in a big way that we’d get it through George from nursery. So I thought well, you know, if I could get him vaccinated then, you know, maybe that would avoid us getting ill. And I suppose it wasn’t from my point of view so worried but more for my husband and for my parents. Because my husband is one of the at risk categories, he’s asthmatic, and so I was a bit worried about that. And also my parents, although they’re not the more elderly, they’re not supposed to be as at risk, they you know, I just thought it was a bit unfair because they kept getting ill as well [laughter]. Because my mother looks after George a couple of days a week and so, you know, everything that he gets they get too, so you know, it’s not just us so I thought well, you know, if I took part in it then, you know I might be avoiding everybody catching it.

 

I sat and thought about it for a couple of days and then I printed all the information off and had a chat with my husband to see what he thought about it. He wasn’t so keen. More from the fact that he just thought from all the information that we had, swine flu wasn’t actually as big a deal as it was being made out so much in the media. And that the likelihood you’d have of a severe case was quite small and therefore he wasn’t worried on behalf of himself and he said “Well, you know, if they are worried about his particular at risk category then they would be vaccinating him” and so he would have had the vaccine, so I wouldn’t have to worry about him. And as my parents aren’t in the at risk category he said well, he didn’t think it was necessary to sort of stick George with a [laughter] with a jab when it wasn’t totally necessary. 

 

Talking to others made her think differently about the balance of risk and benefit.

 But he said he’d, he said he’d have a look at the information and have a read and I was still pondering it so then I sort of happened to, I came into work sort of the next day and I was setting out my lunch and we were chatting away with all of our colleagues and it was really interesting actually because there was some very negative reactions about taking part in the trial, about the swine flu vaccine and that giving it to children, using children as guinea pigs was very frowned upon. Some were very positive but the overall reaction from people when I said I was considering it was that “Well are you sure you really want to do that, you know, stick your child with something that’s not necessarily been proven?” And so that sort of put a bit of doubt in my mind. So originally I was sort of was a bit, you know, quite positive about taking part and going for the trial and then I started thinking “Maybe are they right, are they wrong” and so I thought well I’ll have a little bit more of a look into it and I spoke to my sister who also she has a science background and she was saying “Oh I’m not sure about this particular one” because the information that she’d heard through people, certainly from the people that had taken part in the Australian trial, was that they were using the same basis sort of for the actual vaccine that had been used for what we call, what they thought was a dodgy batch of MMR vaccine. So it had a very small amount of mercury preservative in it. And she said “Well that’s the thing that would really worry me about doing it, was because the basis of this vaccine, you know, hadn’t necessarily had the greatest of track records”. But, you know, this is all heresy it’s not necessarily, you know, this wasn’t from the co-coordinators. 

Ruth felt a sense of relief after making the decision not to enrol her child in the trial....

 So you know I wasn’t a 100% sure. I mean, but I thought mmm do I or do I not take part. And I’m still umming and erring and it’s about a week and a half later or after, after the initial invitation came round and then my husband got called up for coming in to have his own swine flu vaccine. So I thought oh well actually the urgency’s not really there now because, you know, he’s going to be covered and I thought well, you know, it is a big sort of, you know, am I doing it for the right reasons or, you know, am I thinking of George’s best interests or am I thinking of my best interests and is it, you know, is it that, is it that bad to have a little bit of flu considering we’ve had so much flu to be honest, you know, a year and a halfish say since he’s been at nursery. So I thought oh no, so I thought no, I thought actually having reviewed the information I’ve had very mixed reactions from, you know, from my family and from colleagues at work I thought no I don’t think I want to take part, so that’s my story in a nutshell [laughter].

 

Once I’d made the decision I think I felt very relieved and I thought actually I’m maybe being a nicer person because I’m thinking of George first and not of ourselves and as I said, you know, what’s another little bit of flu [laughter] and so I just thought, you know, why not, yes.

 

Parents might want to consider if their child has reacted badly with any previous injections...

 I think one, why you are making the decision would be the first thing I’d say to them. Are you doing it because you believe in the greater good or are you doing it because you’re doing it for selfish reasons, is that valid enough for you? Does your child react badly to injections and things like that would be the other question because if they do get, react badly this isn’t a necessary injection, I don’t, I don’t see, the vaccination against swine flu, I didn’t see it the same level as the vaccinations you that have against the childhood illnesses like hepatitis and diphtheria and all the rest of those and the MMR I didn’t see it on the same level as that I saw it as a much more minor illness and less potential side effects than you would have with say mumps and measles so it didn’t seem, it wasn’t something that I saw as absolutely necessary so therefore yes.

Even though Ruth had decided not to enrol her son in a swine flu vaccine trial, she would...

 I think I mean it wouldn’t dissuade me just because I said no to this particular trial I don’t think it would dissuade me from taking part in other clinical trials. If I thought they were of either benefit to the greater good or whether they were of particular benefit to me or my family but I think I’d still go through the same decision process, I’d still source out the information and make sure I was happy with the decision before I went through with anything really but I think that’s more me rather than, you know, the fact it being a clinical trial.