Caroline - Interview 08

Age at interview: 42

Brief Outline:

Caroline's first baby was born by emergency caesarean. In her next pregnancy she took part in a trial comparing different types of information and decision aids about birth choices for women after a previous caesarean. She chose to attempt a natural birth.

Background:

Caroline used to work as a physiotherapist. She's married with 2 children aged 5 and 2, to whom she's now a full-time mother. Ethnic background/nationality' White British.

More about me...

Caroline’s first baby was born by emergency caesarean. She found it an unpleasant experience, far removed from the home birth she had planned, and she felt the care she received was not good. Although she would have liked to think about a home birth for her second baby, her husband was too worried about complications and so they decided to have a hospital birth. During a visit for a scan, Caroline was asked if she would 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. Caroline was allocated to the group receiving computerised information. She felt she had already decided she wanted to try for a natural delivery, so taking part in the trial did not really change her decision-making. She really took part to help with research, because she has worked in healthcare and knows it can be difficult to find volunteers, rather than to benefit herself. However, having the detailed information provided about the level of risk in trying a natural delivery after a previous caesarean did reassure her that the risks were relatively low.

 

Caroline suggests professionals need to be sensitive to the fact that women in pregnancy and after birth are in a vulnerable and emotional state and that they may find it difficult to concentrate or absorb lots of complex information. After her second baby was born she agreed to take part in an audit of the information given to women before going home. She felt that because she could not remember answers to the questions in exactly the correct format the researcher wanted, she was made to feel she had failed as a mother, and that it was implied the midwife looking after her had failed to inform her properly, which she did not think was the case.

 

She feels clinical trials are essential, but more research is also needed into women’s experience of maternity care, which is not captured by clinical trials research. She is concerned that because much of the money for trials comes from the pharmaceutical industry and is therefore focused on drugs, research into other aspects of care may get neglected. Caroline is not sure if she would take part in any more health research, and advises people to think carefully about what the benefit is for themselves, whether the research is addressing an important question, and whether they can cope with it at a time when they are already feeling vulnerable.

 

You can see more about experiences of taking part in this trial on our section Making decisions about birth after caesarean.

As someone who has worked in healthcare, Caroline took part as a favour to the staff, because she...

It was during one of those visits to a clinic for a scan, I think, that I was approached by one of the midwives, who established that I’d had a first caesarean, and would I be amenable to taking part in some research to do with modes of delivery of information for women deciding on subsequent labours after a caesarean? Because you are given the choice of whether you want to choose a caesarean the second time around and have a pre-booked caesarean, or whether you want to try for a natural birth. So I said, “Sure.” Although at that stage I think I’d pretty much decided that I was going to try for a natural birth anyway.

 

And from then, what kind of information were you given about the trial? Can you remember what they told you the different arms of the trial were?

 

I don’t remember a great deal of detail about it. I know I was given written information. She spoke to me about it and told me what was involved and what the purpose of it was, and that it was to enable, to equip women to be more knowledgeable in their decision-making, and that they were going to use some CD-ROMs, I think it was. And I was given some information sheets as well with, I think I had two A4s that were printed on both sides, so, yeah, four sides of information about it. But I don’t remember large amounts of information. It was more what I would have to do, rather than the overall context of the research, I think.

 

Do you think they could have told you more about that? Would you have liked to know more?

 

I’m not sure that I would at that stage, to be honest. I think I just felt that I was doing them a favour, really, because I’d already pretty much made my decision. And I don’t think I thought that anything they could tell me would influence it, whether it was on a CD-ROM or whatever, because I had already found out everything I thought I needed to know. But being involved in healthcare myself, I know that it’s always, people are looking for people to take part in research trials, and I always want to help out, really.

 

So that was more the motivation for you rather than what you were going to get out of it?

 

Yes.

The trial involved a home visit from a researcher and a follow-up questionnaire.

I was given a CD-ROM to look at and I think I was shown how to do it, how to use the computer - in fact I think the person, the researcher, came and sat with me while we looked through it. And she was very good. She allowed enough time, you know, she said, “Have you finished? Have you finished reading that page?” We moved to the next one and, and so on. So I felt that it was done quite well, really, quite considerately. But I think pregnant women - well, certainly for myself, I mean to a certain extent your brains do turn to mush a little bit [laughs]. So I probably just went through it with her and I would have found it quite difficult to concentrate probably.

 

I can remember it did go on quite a long time, and a lot of it seemed to be similar stuff over and over again, put in a different way just to sort of make it crystal clear. So I think that probably, whether I took in all of the information on the screen at the time or not, I wouldn’t like to say. Probably not.

 

And did they then follow you up and check what actually happened, whether your decision was what actually happened in reality?

 

Yes, they - well, no, they didn’t check up on what kind of labour I’d had until the final part of the study, which was to check. I had another questionnaire to fill out about whether the information I’d been given had influenced my decisions. So it didn’t seem they were particularly interested in my experience. They were interested in what the questions were that they’d been asking particularly. So I don’t remember them particularly getting involved in whether it had made me feel better or worse, or any of that. It was more to do with, “Right, well, has our question been answered or not?” And then they did give me a final bit of input, where I’d asked to be notified about what the results were, because I was interested. And they did get back in touch.

 

And can you remember what the results were that they --

 

Yes, the results were positive and showed that the more information women have and the better it’s delivered, that the more confident they feel about the decisions they’re making.

Caroline argues that the research agenda is partly driven by the interests of drug companies and...

I do think there are important issues to do with the funding and where it comes from, because obviously there are forces at work, the drug company, who have an enormous vested interest in people being ill, because if nobody’s ill, nobody takes any drugs. So they are not interested in funding preventative healthcare, because for them they’d go out of business. They’re the big players when it comes to funding healthcare research. And it’s very difficult to find funding from other bodies for stuff that isn’t to do with drug intervention. And, you know, it falls to the government to fund that kind of thing, and charitable organisations. Government, yeah, great, they could potentially be quite even handed. Charities are not. So for example if a charity is a particularly sexy charity that attracts a lot of money, and organisations that deal with children typically do that, organisations that deal with old people typically don’t. So those charities have lots of money to spend, the successful, well-known, sexy charities, and obviously they want to spend it on their particular thing that they deal with. They’re not going to fund research on, you know, something that’s nothing to do with what they support. So that is an immense problem, because those particular charities don’t necessarily serve the needs of the biggest number of people. I mean if you looked, I don’t know what the demographics are, but you could argue the case that the healthcare needs for old people are the biggest number, the biggest group of people requiring healthcare, and that’s where the money should be poured. But it doesn’t work like that, and so there are lots and lots of funding issues for that kind of research.

 

Whereas things like research into a new drug treatment for stroke, you know, obviously lots of money there. Things like research into drug and drug therapies for MS [multiple sclerosis], lots of money there, because organisations like the MS Society are huge and strong and attract lots of funding because they’re very efficient at fund-raising. So, yes, there are lots of issues to do with funding. 

Caroline thinks women's feelings about birth and postnatal care need more investigation, using...

Are there other areas that you think are being neglected that you would like to see being researched?

 

Well, when you speak to the majority of women about the experiences they have in hospital to do with their birth, there are some quite strong themes that emerge. And information is one of them. But I think that is changing because of the amount of information that’s available online. And most women get the vast majority of their information from talking to other women. And it does sometimes feel when you’re pregnant that other women are just dying to tell you all about what happened to them. And I’ve got a theory about that, and it’s because having a baby, giving birth, is an immensely traumatic event. A few women have a very, very beautiful experience, where flowers burst into bloom and the sun comes out and it’s all lovely. But I’ve never met one of them. Most women have a birthing experience which is unpleasant on some level or other. And I think that women like to relive those experiences as part of their own self-therapy, because talking it through with other people is a good way of getting over the trauma of having given birth. And that’s why any chance you give to a woman to tell you about her birthing experiences and she’ll tell you in lurid detail.

 

There’s other strong themes about nursing care on the wards. It’s very rare to find women who say, “Yeah, I had a really lovely time and the nurses were all beautiful.” It’s always the other way round, where people say, “God, you know, I had to go and do this for myself. I had to do that. It was very traumatic.” And noise levels, women often say, you’ve just given birth, it’s one of the most private, intense moments of your life, and you’re there in a dormitory, you know, like a public dormitory in the cheapest, tattiest hotel you could ever imagine, with four complete strangers. And you do kind of think, “We’re in the second, third millennium now. Is this really the way that women have to bring new life into the world?”

 

I think there’s a place for randomised controlled trials, but I think the way that the birthing experience needs to be investigated, it should be more experiential, because that’s the way that women experience it, that’s the way they talk about it. They discuss it endlessly as part of their own therapy. It’s how you get over the experience. You talk about it, you tell other mums about it, you find people who’ve had worse experiences than you, better experiences. And, you know, finding out that in fact someone else has had a really horrible and similar experience to you at that exact same hospital on that exact same ward makes you feel vindicated. You then start to think, “It’s not me. I wasn’t just a cronky, grumpy patient. Actually there’s a problem there on that ward.” That’s what these people need to hear.

 

But often they’re not that interested in that because I suppose there’s nothing they can do about it. If they can’t get the staff for a particular ward, they can’t get the staff.

Caroline felt the researchers were only interested in certain questions which weren't really...

And did they then follow you up and check what actually happened, whether your decision was what actually happened in reality?

 

Yes, they - well, no, they didn’t check up on what kind of labour I’d had until the final part of the study, which was to check. I had another questionnaire to fill out about whether the information I’d been given had influenced my decisions. So it didn’t seem they were particularly interested in my experience. They were interested in what the questions were that they’d been asking particularly. So I don’t remember them particularly getting involved in whether it had made me feel better or worse, or any of that. It was more to do with, “Right, well, has our question been answered or not?” And then they did give me a final bit of input, where I’d asked to be notified about what the results were, because I was interested. And they did get back in touch.

 

And can you remember what the results were that they --

 

Yes, the results were positive and showed that the more, the more information women have and the better it’s delivered, that, that the more confident they feel about the decisions they’re making.

 

Can you remember if there was any impact on the number of vaginal versus caesarean deliveries?

 

No. But I don’t think they were looking at that. I think they were just looking at people’s confidence in the decisions they were making about whether to have a caesarean or not second time around.

 

The questionnaire that they sent you, can you remember how long it was, what kind of questions it had?

 

I think it was quite long and they did this thing of asking the same question in a lot of different ways, I suppose to avoid people making mistaken answers and not reflecting their true feeling. So they did ask the same question a number of times in different ways. And I think it was a standard set of statements with a, “True, false, in the middle” or, “I agree with this, I don’t agree with it”, which I always find very annoying to answer [laughs], because if you agree with something, you agree with it, don’t you? You either agree with it or you don’t. Not, “Very strongly” or, “A little bit.” You know, particularly if it’s a black and white - “Is the sky blue?” You can’t agree with it strongly or weakly [laughs]. So, yes, it was one of those, I think. And I think the fonts were annoying, small, and the layout was poor, I thought. But you forgive people that in the NHS because [laughs] they’re not media types into publishing. So they don’t understand about these things. So yeah.

 

Looking back, are you glad that you took part?

 

I don’t have strong feelings either way about the DiAMOND* study, particularly. I mean, I felt that it was a small part to play in the huge cogs that are research in the NHS, and I was happy to be involved in it. I suppose you always ask yourself, “Why are they looking into that particularly? Wouldn’t there be better things for them to be looking into?” I don’t know. You do sort of think - you don’t get a sense of what else is going on, I suppose. I did wonder, “What else do they do in this department? Is this a smaller part of a bigger thing that’s going on?”

 

*DiAMOND stands for 'Decision Aids for Mode of Next Delivery'. The aim of the trial was to evaluate two decision aids designed to support women in their decision-making about how to give birth to their next child after a previous caesarean.

Caroline might take part another time, but not in the case of serious illness. She advises others...

What would your message to other people be?

 

I would probably suggest that they thought about their own situation and whether they had the mental headspace for it. And, and think about what they themselves would get out of it, and possibly think carefully about what, what that trial might actually, might or might not show. I think the days when you can just rely on people, no disrespect, but rely on researchers to be doing good work and doing the right thing, like you can rely on - you probably can’t rely on healthcare workers to do the right thing always. I think those days are, are kind of gone. So I think you, it pays to actually have a sense, more of a sense of what’s actually going on. Otherwise it’s a waste of your time and it can actually be counterproductive.

 

And if you personally were offered another trial, would you be interested?

 

I would, but I would look into it a bit more, I think. I think I probably wouldn’t if it was in a acute situation. I mean, I’m not having any more children, so it wouldn’t be on the ward having just given birth again. But if I was in A & E, for example, or, you know, one of my kids was ill, I probably would say, “No thanks. I’m, you know, actually I’m, I’m in my life at the moment and I haven’t really got the wherewithal to deal with all this, to evaluate whether this is worth getting involved with or not.” 

After the birth, Caroline took part in an audit of the information she'd been given. She was made...

I felt everything had gone really well and he was feeding fine, and I was hoping to be able to go home. And the midwife on the ward came round and I said to her, “I’d really like to go home as soon as possible. I’m happy with the way everything is. I’m really keen to just go home.” And she said, “Okay”, she would try to do everything she could to make that happen.

 

And she had some information to give me, which I was quite sure I pretty much knew it all because I’d had a child already. So I knew all about breastfeeding and I knew I was going to breastfeed, and I knew about changing nappies, I knew about meningitis and I knew about all these things. So I was very much, “No, I don’t need that. I’ll be fine.” And she was happy to go along with that. So she was listening to what I was saying and acting on it.

 

So just after lunch we were almost ready to go and somebody came round, a nurse by background, who asked if I’d be happy to take part in an audit that she was conducting about the delivery of information to women immediately after birth. So I said, “Yeah, of course, fine, whatever.” And she then started asking me questions about the information that I’d had. And the way she did it [laughs] was to test me about the contents of the information. So she asked me if I knew what the signs of a hungry baby were. And of course I’d just given birth, I’d had no sleep. And I knew I knew how to recognise a hungry baby, but I couldn’t tell you specifically what those signs were. So I couldn’t tell her about rooting and crying and these kinds of things. So it was a bit embarrassing because I felt that I was dropping the nurse on the, the midwife on the ward in it, because it was making her look as if she’d failed in her job, whereas actually I’d declined that information from her. And there didn’t seem to be a box to tick to say, “I declined that.”

 

The woman who was conducting the audit also managed to make me feel quite stupid, as well, because I clearly came across as somebody who knew nothing about caring for a baby [laughs], whereas I felt quite confident that things would fall into place. She asked me about what the benefits of breastfeeding were, and I can remember all I could think of saying was that it was very portable [laughs], and that wherever you were you had an instant supply, which obviously isn’t the main reason that it’s so advocated by healthcare staff. I said, “Oh, I think it provides immunity against illness.” And she said, “Can you tell me which ones?” And I said, “Asthma” and I can’t remember what else I said now. And she just kept looking at me like there was more. And I just couldn’t get the more. And then after she’d finished, I said, “What was that last one, then?” And she said, “Eczema.” I said, “Oh, I got asthma. I mean, come on, I was nearly there” [laughs].

But she was, she had no humour about her at all and she just wanted to get her boxes ticked so she could go. And the whole experience was unpleasant. I was being interrogated. And I’d just had a baby, I’d had no sleep, I probably wouldn’t have known what my name was at that stage, never mind complicated answers to questions like that. So I felt that experience was quite negative. I felt she undermined my confidence. And I think looking back if I had been the ward midwife, I would have said to the audit woman, “Don’t go near her, don’t hassle her. She’s had no sleep. She just wants to go home. Let’s leave her be.” But, no, you know. So I was in this ridiculous situation of being grilled before I was allowed to go home. 

But at the time I just thought, “Oh, okay. A bit of research. It won’t take long. That’ll help” you know. But actually I think it was probably completely unhelpful, because it turned what had been a good, positive and useful bit of midwifery from the midwife from the ward, it made it look like she hadn’t done her job properly. So I was a little cross about that. But again there was no comeback, there was no way of really letting people know that. And at that point you just want to go home and get on with your life, really.

There’s way too many pointless audits going on. A lot of them are completely pointless, like I think that one was. I mean there are wider political issues to do with why that’s the case. A lot of people working in the NHS have managers who drive them to carry out an audit, doesn’t matter what it is, “Just do an audit.” And so an idea will come out of nowhere, “Oh, let’s audit this or that”, without people actually thinking what, how it can best be carried out, what the impact on their client group is going to be, and what they’re going to do with the results. And I think the ethical committee, part of their role should be, “What’s in it for the patients here?” Not, “Can we answer a question adequately and is it ethical?” It should be, “If the results show a positive result, what does that then mean?” That’s what they should be looking at. Where does it go from there? If there’s no money to take it any further, then what’s the point? It’s a waste of time. And I’m not sure that researchers are necessarily in a position to make those decisions. I think there needs to be a more overall global body looking at the research that goes on and piecing the pieces all together, so you don’t get this hotchpotch of stuff being done all over the place, that’s either replicating itself or going down a blind alley, really.

 

 

Caroline sees it as the job of ethics committees to protect patient interests. Ideally you want...

And I think the ethical committee, part of their role should be, “What’s in it for the patients here?” Not, “Can we answer a question adequately and is it ethical?” It should be, “If the results show a positive result, what does that then mean?” That’s what they should be looking at. Where does it go from there? If there’s no money to take it any further, then what’s the point? It’s a waste of time. And I’m not sure that researchers are necessarily in a position to make those decisions. I think there needs to be a more overall global body looking at the research that goes on and piecing the pieces all together, so you don’t get this hotchpotch of stuff being done all over the place, that’s either replicating itself or going down a blind alley, really.

 

Who are the people who need to be involved in that process, do you think? The oversight?

 

I would have thought maybe ethical committees would be in a place, a position to do that, because they would have an overview of all of the research that is going on in a particular locality. But that also needs to be joined up nationally, and possibly globally as well, I guess.

 

And more patient involvement in that, do you think?

 

Ideally, yeah - but I think it’s really difficult for people to understand the ins and outs of research and the methodologies that are involved. It’s a complicated business that is sort of beyond the reach of the mental powers of most mortal people, I would say, including myself. I don’t pretend to understand - particularly statistical analysis and how data is manipulated, which makes a mockery of a lot of RCTs [Randomised Controlled Trials] anyway, you know, because you can make results show what you want them to show to a great extent - and even if you don’t make the results, even if you do it completely by the book, you still have to use terms and phrases and statistical concepts that most people don’t understand. Like, what’s it called? I should know this, I did A level statistics, I should know a little bit about this. The confidence interval - the chances of a particular set of data coming about by chance. And you have to be able to grasp that concept to understand whether the statistical data that has come about is likely to be meaningful or not. That’s complicated stuff for mathematicians, not most healthcare workers, I would say.