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

[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.

[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.

🤦🏽‍♀️

[BitOfFun]

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

[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.

[21daysofsummer]

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

[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.

[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.

[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.