Guest post: “Communicating risk in pregnancy – we need a woman-centred approach”

[MumsnetGuestPosts]

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.

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

[ClareMurphy]

Thanks all for commenting and/or completing the survey! It’s really good to hear that our concerns strike a chord - and there are clearly many areas where women think risk is not effectively communicated, or that risks to the mother are presented as secondary to those of the baby. Birth intervention in particular appears to be a key area of concern.

A couple of you did not want to complete the survey because we asked about gender. The survey is for people who have given birth in the last five years, so we do not ask about the sex of respondents. We do, however, ask about gender, because we want to ensure that the survey does not exclude anyone, and because, as pigeonofdoom points out, we are interested in understanding how experiences differ for different groups, including for participants who identify as different genders.

Thank you so much for your feedback. We look forward to drawing up some clear principles for woman-centred risk communication using the information you’ve given us through the survey, and would love to keep you posted.

In the meantime, if you’d like to keep up to date with the project and associated blogs from parents, practitioners, research scientists and more, keep following us on Twitter at @WRISK_project and via our webpage //www.wrisk.org.uk.

[PigeonofDoom]

Actually, it’s not. As I mentioned, the researchers will already know the sex of participants as you have to have been pregnant in the last 5 years to have filled in the survey. Ergo you are biologically female. They are additionally collecting data on gender. You don’t like the word gender but it is appropriate here.
Also, sex is not a dirty word in clinical research, if you need to know it for safety or stats reasons then you ask it. I would argue that neither apply here.

[FizzyGreenWater]

As I said above, people are spectacularly missing the point here. The survey does not need to collect your sex because it is only open to anyone that has been pregnant so researchers will already know you are female

No, not missing the point at all.

The point is that language matters.

Biological sex, biological sex. Say it say it say it.

It's becoming a dirty word, and that is what we are pushing back against.

'Gender' is an incorrect term to use here. The correct term is SEX.

[21daysofsummer]

@PigeonofDoom I think you’ve just aired yours, darling.

[PigeonofDoom]

As I said above, people are spectacularly missing the point here. The survey does not need to collect your sex because it is only open to anyone that has been pregnant so researchers will already know you are female. Collecting gender is informative in this situation as it may pick out issues in particular groups. If you don’t like reference to gender or the very idea of people who might identify differently to their biological sex then don’t fill it it in. You’re not doing women a service by derailing a useful piece of research, you’re just airing your prejudices.

[BitOfFun]

Emphasising 'gender' over biological sex can have tragic consequences for women and babies. It's so important not to lose sight of reality.

[21daysofsummer]

I filled it out so far but then came to the gender question.

The thing is that you say you are inclusive of trans people, but the fact remains that if you have EVER been pregnant then your SEX is female.

And you say you want to be more woman centred?

Wow. Just wow.

🤦🏽‍♀️

[JaneEyreAgain]

It is so important to listen to women and to ensure that they are listened to. I am a mother of three and a doula.

The following is a quote from a WHO report on the state of the world's midwifery. While the report's focus is on developing countries, it should also be considered when considering maternity care in the UK:

'Health care providers need to speak a language that women and their families understand, show empathy, broach fears and beliefs with respect and adapt to cultural and individual beliefs if there is no
medical contra-indication. This includes considering women’s values, beliefs, and feelings and respecting their dignity and autonomy during the birthing process so as to humanize childbirth. A 2007 Cochrane review concluded that women who had continuous support in childbirth were likely to have a slightly shorter labour, were more likely to have a spontaneous vaginal birth and less likely to report dissatisfaction with their childbirth experiences. In Latin America, several projects have recorded positive results in the reduction of dissatisfaction both from women giving birth and providers, an increase in institutional deliveries and a reduction in maternal death. The main facilitators for these results include women’s own cultural values and beliefs in a natural birth as well as institutional strategies designed to prevent unnecessary medical interventions. It has long been recognized that women in particular are subject to poor quality of care in reproductive health services across the developing world. Negative attitudes from health care professionals, or community perceptions thereof, can discourage women from seeking care. A recent analysis identifies disrespect and abuse in facility-based childbirth as a major barrier to the utilization of skilled care that can sometimes be much stronger than the commonly recognized geographical or financial barriers. Physical abuse, non-consented, non-confidential and non-dignified care, discrimination, abandonment and retention in facilities were all reported in the analysis.'

We need to consider that informed consent really means, ensuring information is evidence-based and real risks, not relative risks are considered, also that the patient risks are considered, not just the global risks. Real consent means having the choice to say no without being pressurised and having your decisions respected.

[MyInnerAlto]

'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”'

Very well put!

I agree with the limitations of information about population-level risk.
One particular issue I've found interesting (I'm not in UK so can't fill in the survey, which is a shame tbh because I do follow UK discourse) is listeriosis. You see people on here posting that they've been 'naughty' and eaten blue cheese because (e.g. 'the French all eat it and their babies are fine' and 'a little bit won't hurt' - treating the risk as if it were the same kind of dose-response risk as alcohol (OK, that's a debate in itself, I do realise) rather than the very different risk type/mechanism (rare instance but potentially devastating consequences) it is. That seems to me to indicate that some risk messages aren't being communicated clearly, or, perhaps, that advice - in general - is being heard/received as 'observe this list of things if you want to be a Good Pregnant Woman'. Some stick to them religiously, some (rightly) resent the tone and rebel.

[MrsTerryPratchett]

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.

[PigeonofDoom]

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.

[thatwouldbeanecumenicalmatter]

Yeah, so not centering women, about pregnancy . Won't be filling that in.

[PigeonofDoom]

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.

[Jess2806]

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

[AnotherEmma]

"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!"

[Anneorr]

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?

[FizzyGreenWater]

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.

[FermatsTheorem]

Costed not coated. Damn autocorrect.

[FermatsTheorem]

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.)

[Bowlofbabelfish]

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.

[StraffeHendrik]

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!!

[PigeonofDoom]

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.

[stucknoue]

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

[stealthbanana]

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”

[itscallednickingbentcoppers]

@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.