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Sue - Interview 01

Age at interview: 44
Brief Outline: Sue's first baby was born by emergency caesarean. In her next pregnancy she took part in a trial looking at different types of information and decision aids about birth choices for women who had already had one caesarean. She was pleased to be involved.
Background: Sue used to work as a financial adviser and veterinary nurse. She's married with 2 children aged 5 and 1, to whom she's now a full-time mother. Ethnic background/nationality' White British.

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Sue’s first baby was born by emergency caesarean. She always felt a bit as though she had failed by not having a vaginal delivery and would have liked to know more about why she had to have a caesarean.
 
In her next pregnancy, when she was about 14 weeks pregnant, the midwife at one of her antenatal appointments could not hear the baby’s heartbeat so sent her for a scan. The scan showed the baby was fine, but while she was there she was invited to take part in a trial investigating different types of information and computerised decision aids about whether to have another caesarean, and comparing these with normal information. Sue agreed to take part and was allocated to one of the groups receiving an extra intervention. A researcher came to visit her at home, asked her some survey questions and showed her how to use the computerised information. She had to answer further questions later on about how easy she had found it to use the information and what effect it had on her decision.
 
Sue was pleased to be given the extra information and found it really helped her feel confident in her decision to have another caesarean. When she had another hospital appointment, the doctor she saw tried to persuade her to change her mind and have a vaginal delivery, but Sue went back to the computerised information and used it to help her make up her mind again that she really did want a caesarean.
 
Her view of randomisation is that it is necessary to ensure that all different types of people are included in each group, and it is not biased towards people from a particular area or income group, for example. Although she was pleased to be given the extra information, she would have carried on with the trial even if she had been allocated to the normal information group, as she thinks it is only by doing research that we can learn. The results of the trial showed the interventions helped people to feel more satisfied with their decisions, and that would still have been helpful to other women in future even if Sue herself did not have the extra information.
 
She feels the trial was an important project on a subject that women really care about. She would like to see more research into miscarriage.
 
(You can see more about experiences of taking part in this trial on the Healthtalkonline website on Making decisions about birth after caesarean)
 

It was explained clearly to Sue that there was a trial comparing the effect of different types of...

It was explained clearly to Sue that there was a trial comparing the effect of different types of...

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She explained to me that it was a trial of people who’d already had one caesarean, and how that they, how they wished to proceed with the second birth, or the following birth. And she told me that there would be different, there would just be different questions, different facts, you would have, be given more information, and that - to help you make your decision. And that she said that I would be interviewed by people, and she told me that if I wanted to pull out at any time I could. If I, you know, wanted it to stop, I could.
 
And obviously everything would be treated confidentially. And then she asked me to, as I wanting to go forward with it, you know, to take this piece of paper away, read all about it and then sign it, and, you know, send it back in, which I did. I mean, well, I actually just signed it there. I mean, I read through it there, and then signed it, so again, so...
 
And so did, did she say what the different groups were going to be in the trial, and how you’d be allocated to one group or another?
 
I can’t remember if she said it then, or whether it was… later, I really can’t remember. I was told - actually it was on the information sheet that I was given, that there would be three different groups. One - and I can’t remember the exact things - but one would be, you know, different decisions and different, there would be three different segments of how the trial would be run, and you would be allocated into one of the groups, and that was actually written down in the thing.
 

Sue was asked about the trial when the midwife could not hear her baby’s heart and she came for...

Sue was asked about the trial when the midwife could not hear her baby’s heart and she came for...

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She scanned me and then, then said, “This is the trial and this is what we want to do. And this is what we want to look for and to see whether it helps.” And, you know, whether - because I’d had a caesarean before, you know, it was - yeah, she explained what the trial was about and what they wanted to achieve.
 
Did it worry you that you were asked at that point when you were, had just had this quite traumatic experience?
 
No, because it was – right, when I got to the hospital a lady came out and, you know, they were expecting me and she came out and she said, “Oh would you be prepared to take forward in this trial?” But then she took me in to see the person who does the scan and then it was then discussed afterwards. So no it wasn’t, because the scan was obviously positive, and it was there and so you could see everything. So my mind was totally at rest anyway, because I suppose obviously I’d gone to the hospital because my midwife couldn’t hear, but because I’d had miscarriages in the past, I was pretty, pretty certain that I wasn’t, I had not miscarried, because you know. You do know when you’re pregnant, or I always knew that I was about to miscarry. So I wasn’t that stressed when I went down there.
 
Okay.
 
I was in quite a, you know, sensible frame of mind. And in fact, well, I got an extra scan and saw the baby again and it was all really healthy so. So, you know, in a way it was good because I got an extra scan, and I got involved on this thing, this trial.
 
But they did actually mention it before you went in for the scan, the trial? Although they didn’t discuss it in detail, they mentioned it beforehand.
 
Yes, but it was the, it was a nurse that came out so whether she actually knew why I was there. That bit’s a bit hazy because I do remember because you always sign a form before you go in. And, you know, literally she brought me the form and then they took me straight in, so I wasn’t really looking at it. So no, that didn’t stress me in any way.
 
Okay. Did you feel under any pressure to take part?
 
No. No, there was no pressure at all. No, “This is this is a trial, this is what we want to do. Would you like to take part? Yes or no.” And the fact that you take the form away to sign it, you know, it’s – no, there wasn’t any pressure at all.  
 

Sue took part in a trial of decision aids because she wanted more information to help her...

Sue took part in a trial of decision aids because she wanted more information to help her...

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So tell me about what your motivations were for taking part. What was the most important thing for you?
 
I think because I’d had emergency, an emergency caesarean and, you know, I’m quite a large frame, I had quite a small baby - well, a small baby relative to my size - and almost felt that I’d failed because I couldn’t deliver her normally. My first child wasn’t, it was not a normal delivery. And you think, “Oh, maybe it was I was too much of a wimp and I didn’t push hard enough, or maybe, you know, it was my fault.” And I do think, you know, speaking to people who’ve had caesareans as well, you do feel a bit of a failure, because you didn’t do it normally. And then there’s other people just go in and they [clicks fingers] pop their babies out and it’s not a problem.
 
So you do feel that you’ve failed in that way, although the medical people tell you, you know, “This is why we did it and, no, you’re not a failure”, but you still, you know, you have one conversation with the surgeon afterwards or something and then you sort of forget it, because you’ve just had a caesarean. So I think from that point of view it was to make you understand all the things that can, well, maybe go wrong in a normal delivery, maybe understand, you know, why caesareans are done, and it was just really to, for me - well for us - that second time around that we could make a clear decision about what we wanted to do. And then it, like I said, you know, it’s just better to have more facts, more information, for you to be able to think it, think it through and decide what you want to do, so.
 
So it was really the benefit of having that extra information was, was the main attraction for you?
 
Yes, because you can - that’s it. And I’m sure most, like most women when you’ve been pregnant you’ve got so many things going on in your mind, so many things when you go and see your doctor, your consultant or your midwife, and, well, you know, you have - really you have to write all your questions otherwise you forget them. But it’s better to, for then you would be able to then sit down yourself and go through it. You can discuss all the things with the person, the medical person, but then you can actually sit back in your own time and go through it again* and just, you know - and if you want to go through it again and again you can, because it’s there, it’s accessible and it’s in your own home. You’ve got plenty of time to do it, and it just makes it easier.
 
*Footnote' The decision aid information was shown to women on a laptop by a researcher, and was also available on a website for women to look at again when they wanted to. 
 
 

After the trial Sue was sent a copy of the report and an easy-to-read summary. She was pleased...

After the trial Sue was sent a copy of the report and an easy-to-read summary. She was pleased...

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When the findings had been analysed they sent you the report with a covering letter saying that, “This is the report that we’ve made”, you know. “It was published in the British Medical Journal.” And it gave you an overview of what the results were, and then it gave you the actual, the report that was submitted to the BMA [British Medical Association]*, or whoever it was. I think - no it was the BMA. So that they, so they sent you, they sent you the medical report, and sent you an overview so that you understood any medical jargon or anything that was in it. So they just, you know, it was very clear what they sent to you, so you’ve, you know, you fully understood and, you know, you understood the results of the survey or the trial.
 
Was there anything in the results that surprised you?
 
Not really, because, well, because extra information helps you. You know, it was extra information in a straightforward way, very easy to understand, no jargon in it, you know - or if they did have some jargon in, they explained what, you know, the words meant. So it was very simple to understand, so it was good. So no, I mean it was almost like a foregone conclusion. You know, give you more information in a way that’s easily accessible and easy to understand, and it’s going to make it easier for you to understand it.
 
So, you know, I think it was. I mean, I’m glad I took part in the trial because, you know, it proves that it was worthwhile and hopefully now people will understand it, and they’ll be able to give people more information, and it will make other people’s decisions so much easier. And you just get a clearer way, some of them, you know - ‘Should I or shouldn’t I?’ or ‘What if I do? What if I don’t?’ kind of thing. It just clears it away and gets it clear in your mind about what you’re going to do next time.
 
*FOOTNOTE' The British Medical Journal is the journal of the British Medical Association.
 

Sue would not have minded if she had been allocated to the control group. Control groups are...

Sue would not have minded if she had been allocated to the control group. Control groups are...

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I sent the form in. They then contacted me and arranged for a lady to come round and see me, a person to come round and see me, to interview me and explain all of the different things, and that she would then tell me which group I was in. So she did it. That was all explained after I’d said I would do the trial. And so the lady came out to the house and just went through everything. So it was, it was so it was very clear, really, because she talked me all the way through it. And then she showed me what the different things that they would be doing, and the different things about, you know, how the trial would be run and, you know, she just went over, she did get, she went over the things that had been written down, but just so it was clear, and you understood what they were doing, why they were doing it and how they were doing it.
 
If, when the allocation was done, you’d been allocated to the group that just got the usual care, would you have felt differently about whether or not to take part?
 
…I don’t – no, I don’t think so. I think, I suppose I strongly believe that, you know, unless you research things you’re never going to learn anything more anyway. You can’t just suddenly pull [clicks fingers] “There it is”, out of the blue. You’ve got to research it and you’ve got to have, in a trial, you’ve got to have a normal or - I don’t know whatever would be the right name - you’d have to have a thing to be able to measure it against, so.
 
Mm. A control.
 
Yeah. Control, that’s it. Yes. So you’d need that. So no, I wouldn’t have. No, I don’t think it would have affected it at all. You know, I wanted to get in part of it, so. 
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