Guest post: “Communicating risk in pregnancy – we need a woman-centred approach”
The British Pregnancy Advisory Services (bpas) have launched a project looking into how risk is communicated to women around matters relating to pregnancy. In this guest post Clare Murphy explains how you can get involved.
Director of External Affairs at the British Pregnancy Advisory Service
Posted on: Thu 20-Jun-19 13:56:30
(33 comments )
A study published last week suggested that being stressed in early pregnancy could be responsible for a lower sperm count in some men: Stress in pregnancy reduces the chances of grandchildren, was the Telegraph’s take. It was a pertinent example of the way in which increasingly many child (and adult) outcomes are traced by researchers back to what a woman did or didn’t do in pregnancy, or in this case how she responded to events beyond her control – death of a relative for example, or a job loss.
Women today are subject to many messages about how to secure the best possible outcomes for their pregnancies, which is of course is what we all want. Sometimes these messages may be empowering, at other times they may feel overwhelming and cause anxiety, particularly if women have no means to act on them. There is concern that the evidence underpinning messages is not always clear – and that the precautionary principle may be what some women want, but may not give others the depth of information they require to inform their own choices.
Public health messages are designed to help us protect our pregnancies from all possible harm; but we also need to ensure women themselves aren’t put at risk of harm in the process. Mumsnet users for example frequently discuss the use and safety of medications in pregnancy. Women who are pregnant or planning a pregnancy sometimes find they are denied medications by their GP, like antidepressants, or worry about whether they may be harming their pregnancies if they continue to take them, even under medical advice. Women still suffer with extreme pregnancy sickness because they can’t access the treatment they need, or think they should wait until they are absolutely desperate before taking the medications they are prescribed. At bpas we have seen the fallout of risk messaging that isn’t evidence-based and doesn’t appreciate women’s needs: women can end up terminating wanted pregnancies because they couldn’t get the treatment they need for pregnancy sickness and simply could not cope anymore.
We don't know how widely our concerns are shared, where women wish to see improvements, or what the issues are that matter most – so we are starting with an exploration of women's perspectives of risk messaging.
At worst, women can die when we do not get discussions about risk right. The last Confidential Inquiry into Maternal Deaths found women who died after being taken off antidepressants or where essential blood clot treatment was delayed because of fears it could interfere with breastfeeding.
We think we need a more woman-centred approach to the way in which we talk about risk in pregnancy – from the way in which the initial research gets framed to the public health messages which eventually result, which are of course aimed at women. With funding from the Wellcome Trust we have established the WRISK project, in partnership with academics at Cardiff University. Drawing on the expertise of advocates from a range of women’s organisations (the National Childbirth Trust among others), this is a project which aims to put women’s voices centre-stage and influence the discussion going forward.
This project may not change things overnight, and it is also a work in progress. We don’t know how widely our concerns are shared, where women wish to see improvements, or what the issues are that matter most – so we are starting with an exploration of women’s perspectives of risk messaging. Lessons drawn from women’s experiences will be considered by a group of stakeholders, including scientists, public health and risk communication specialists, women’s advocacy groups, and specialists in women’s sexual and reproductive health. This work will lead to the development of recommendations for respectful risk communication in pregnancy.
We need Mumsnet users' help with this project – and would be thrilled if you would fill in our survey to share your experiences and thoughts with us, and help us get the agenda right.
Clare will be returning to the guest post to answer some user questions
By Clare Murphy
Great post. I have a foot on both sides of this. I'm a mother myself and also support young women through pregnancy. The young women I support have histories of homelessness, drug use and domestic violence. And sometimes the children are impacted by that. However the 'advice' offered to them is frequently hectoring, judgmental and not particularly helpful.
I think a harm reduction, woman-centred approach is sorely needed. Evidence-based would be nice as in my experience. The constant infantilization of women WRT advice in pregnancy is irritating to women who want to follow guidelines and terrifying to women who don't.
From my experience the worse outcomes are for women and children who are living with family violence during pregnancy and early development, caused by others. And that seems to be ignored in favour of things women can be judged on.
Yes woman centered would be nice I got a bit sick of my pregnancy being hijacked with how my partner felt about my thyroid problems and how it could effect the pregnancy
The irony of calling for a 'woman centred' approach and then asking THAT gender question on your survey!
Communicating risk (probability times seriousness of exposure) is something I've got a professional interest in (insured losses and reinsurance rather than health) so I'm very interested to see ideas on how to communicate to a broad and diverse range of end users, so will follow with interest.
On a personal level, one thing I found useful were the "array of little people" infographics for screening test results showing correct diagnoses, misses and false alarms.
One thing the scientist in me would love to see (though I appreciate this doesn't come under the heading of public communication of risk) is figures for what percentage of the variance a particular factor causes. For instance, BF marginally decreases the risk of asthma - but how does it rank in importance compared to family history, air pollution, etc?
This is very much needed. Since the moment I got pregnant I have felt like everything i do is wrong. There are times, like when DS was newborn, that I have lived in a state of sheer terror for fear of causing SIDS for example. The stress example makes you feel like you can't think your own thoughts inside your head without causing harm. Sometimes it feels like everything I do as a mum will damage my son in some way
Risks are badly presented in most cases. There's a preoccupation with relative risks rather than absolute risks in most communications in healthcare.
The screening booklet I've been given (written by PHE) is not good. It doesn't adequately cover false positives or false negatives around the Combined Screening tests offered (I haven't checked up on the later tests mentioned yet) and makes no mention of the age-related component that increases these rates in older women. I am fed up of seeing the number of women on these boards who have been caused unnecessary stress by results from these tests when it is very apparent they did not understand what they were letting themselves in for.
For later in pregnancy, I'd like discussion of risks to include both the risks of not intervening - but also the risks of the intervention. I went overdue with both DC1 and DC2 and although doctors and midwives were very happy to talk about the risks of going overdue - they didn't weigh that against the risks of induction and in fact didn't seem to think about it that way at all.
It's such a lottery with your HCPs isn't it, Teddy.. I was 40+ (enhanced risk of placental failure), but with a baby that was small for dates (so they wanted to give him as much time as possible to grow, and also didn't want to put him through the stress of an induction). I was lucky in that my consultant was great at discussing the pros and cons, but I got the feeling that it was more of an art than a science, and he certainly couldn't put precise numbers to it. (Did a CS at 41 weeks in the end.)
I suppose that's the other issue - statistics describe whole populations, not individuals. As my consultant said, how exactly you balance the risks at the level of an individual woman - a fit, slim, non-smoking, non-drinking 40 something versus an overweight 20 year old smoker is much more difficult to give answers for.
Coming from a mathematical background, I'd always leaned towards interpreting statistics as frequencies in a population, but pregnancy felt so different - I was accutely aware that there was no 1/100th of a situation available. For me personally it would go completely one way or completely the other.
@FermatsTheorem that's a good point. I've had people wonder why I was sent for C Sec rather than having my waters broken after 48 hours of failed induction but I remember the consultant saying to me it's your first baby and you're diabetic so we won't take the chance, things I hadn't even considered might increase the risk.
This is very welcome. I am perplexed at how absolutist much of the pregnancy related advice is. I understand that public health advice is often aimed at the lowest common denominator, as it were, but we seem to have allowed the fact that it’s not possible to do double blind randomised controlled trials on lots of pregnancy related interventions to override some common sense messages about pregnancy and birth. For example, why can my obstetrician say to me that most first gen antihistamines have been used without incident for many decades yet my pharmacist parrot robotically that no antihistamine is proven safe to use in pregnancy and therefore refuse to sell me some piriton?
Similarly the way risks are presented around the various means of giving birth and interventions - it’s hard to conclude that they’re particularly women centred.
Overall, as well, it would generally be great if the tone of pregnancy and neonatal risk communication moved from “you’re a helpless small minded incubator who we have to keep everything Very Simple for [talk slowly and patronisingly]” to “you are an adult woman who is making decisions about your own body and despite gestating a foetus you are still a sentient human being who is capable of rational thought and deed”
I found it very woman centred, I have given birth in two different countries and both times I chose full midwife care and I have no complaints. But then I'm able to read and interpret information myself, I don't need a dr or midwife to explain risk, you don't need a medical degree just good English and common sense
Actually, I found it very baby centred. Which is obviously the point but I have felt that sometimes risks to the mother are ignored or not highlighted because the focus during pregnancy and birth is on outcomes for the baby. I didn’t find this so much with individual health care providers but more in society at large. It particularly irritates me in terms of exercise advice that I see on here and elsewhere, which is always discussed in terms of what’s safe for the baby but NOT what’s safe for the woman’s body. Your body is under a huge amount of strain when you’re pregnant and whilst considering impact on the baby is important, considering impact on your already strained body is almost more so. Gets completely ignored.
Rey much needed. I had so many examples of non evidence based advice I was given, that I crashed the survey trying to put them all in the 'other comments' box!!
I was going to fill this out. But then it asked for my gender.
Everyone who has ever given birth is of the female SEX. Sex. Not gender. Sex.
Sort that out and I’ll fill the damn thing in, but if you want my opinion then go look at the birth Injury threads and the threads on postnatal care. That’s what needs sorting. The advice on food and exercise is fine. Sort out the birth and postnatal CARE.
Good point about it being baby centred, Pigeon. For instance advice round CSs often focuses on risks to the baby, plus a side order of risk to the mother from surgery, while not mentioning morbidity at all (long term damage to the mother's pelvic floor).
IIRC, NICE found that when they coated vaginal birth to include follow up surgery to repair birth injuries, vaginal births cost as much to the NHS as CSs, which helps to contextualise the risks to women.
(As an aside, I agree with Bowl - in this context it's biological sex which matters, not some nebulous concept of gender.)
Costed not coated. Damn autocorrect.
Same here. Won't be filling it out.
My gender has nothing to do with whether I'm eligible to fill out this survey.
My biological sex does. Female.
And I agree, forget about fussing over whether we've been told enough about vitamins. Birth, cascade of interventions, clear peer-reviewed stats on instrumental birth vs CS outcomes FOR THE MOTHER which take into account post-natal recovery and repair operation stats etc.
Unsure if I’m pregnant or not
I tested today with a strip test and got a faint positive then tested again a few hours later with a cb digital one but that’s come back negative. Anybody else had anything similar?
"The WRISK project is inclusive of trans, non-binary and intersex people. For this reason, the project team will always refer to individuals according to their self-determined gender. We tend to use the words ‘woman/women’ for convenience, as the great majority of people covered by the WRISK research self-identify as women. However, the WRISK project is inclusive of everyone who has been pregnant in the past five years; regardless of their gender identification. This includes trans men and non-binary individuals. If you have any questions about this please contact the research team."
What? A research project about PREGNANCY is mostly "self-identifying women"? Um yeah I think you mean biological women, mate! Last I heard a "self-identifying woman" - that is, a trans woman - can't get pregnant! And if you want to include trans men just say what you mean which is "women and trans men!"
I am looking for advice. My son is 6 weeks old and will only settle into a good sleep after taking him out in the car. He will then sleep for a few hours but will start making very loud grunting noises all the second half of the night. He also does this halfway through his bottles. He only stops if he falls into a really deep sleep! Any advice on what is causing this? My 26 month old never did this and I am desperate to get a bit more sleep during the second part of the night. Thank you
I don’t really see the issue here with collecting gender. As you have to have been pregnant in the last 5 years, the researchers will already know the sex of participants (ie all female- biological males are excluded). By asking for gender, it allows the researchers to potentially pull out risks or areas of concern for different groups, eg trans men. Seems sensible to me tbh.
Yeah, so not centering women, about pregnancy . Won't be filling that in.
You have to have been pregnant in the last 5 years to fill this in so this obviously is women centred
Not every woman identifies as such but they still have a right to have their opinions heard on this important issue imo.
we seem to have allowed the fact that it’s not possible to do double blind randomised controlled trials on lots of pregnancy related interventions to override some common sense messages about pregnancy and birth
I wanted to take lysine to prevent cold sores and was told not to. I pointed out that bloody broccoli hasn't been tested in pregnancy either but I get to eat it.
Please login first.