The WRISK project regularly asks contributors to share their perspectives on a range of issues related to risk communication in pregnancy to further understanding of the challenges faced by scientists, clinicians, policy makers, and of course women themselves when trying to navigate risk messaging. These represent individual and personal viewpoints, and are aimed at encouraging reflection and discussion, rather than reaching conclusions.
Rebecca Brione is Research and Partnerships Officer at Birthrights. She oversees Birthrights’ research programme, with a focus on multiple disadvantage, mental capacity and disability. Outside of her work for Birthrights, Rebecca has a particular interest in reproductive justice and autonomy.
We all know that the words ‘risk’ and ‘pregnancy’ seem to go hand in hand. We know too that women are entitled to personalised discussions about the risks and benefits that are material to them to enable them to make choices about their care. But what about those situations where the risk information might be – or is perceived as being – more complex?
In 2018, Birthrights published research carried out by Bournemouth University with the University of Liverpool on the maternity experiences of women with physical and sensory impairments. The researchers asked 37 women about their experiences through an online survey, and explored these in more depth with ten women through in-depth qualitative interviews. Human rights law gives pregnant women the right to make their own choices about their care and to be given standards of care that respect their dignity and autonomy as human beings. Unfortunately many of the women in this study experienced care that was disrespectful, or where their choices were limited.
The concept of risk loomed large in many women’s experiences. Indeed, a third of women in the survey reported being automatically placed in a high-risk category. Women were often not clear what being deemed “high risk” meant beyond a label but presumed it to be as a result of their condition. One woman described feeling that this was her maternity provider’s response to feeling “We don’t know what to do with you… you’re a bit different to what we’re used to dealing with so we are going to put you automatically into a high risk category”.
The impact of being treated as ‘high risk’ was different for different women. Some were told explicitly that they were not able to access certain choices as a result: “I wasn’t allowed to go to low risk centre despite my disability not affecting my capacity to give birth”. Some women were offered additional monitoring which they welcomed, but others were given it without the opportunity to discuss why it was being offered – and thus presumably whether they wanted it. One woman booked late for care in part to avoid being classified by risk.
Some women reported feeling like a risk in themselves: “I was told I was a health and safety risk”. One survey respondent reported she was told she “couldn’t have a water birth in case [she] couldn’t get out of the water in a hurry, despite demonstrating…I could do it unaided”. She questioned whether she was being held to higher standards than other women, asking “what would they do if someone collapsed in the pool anyway”. Another, insultingly, had to prove she could get into different birth positions twice – in case the first time was a “fluke” – before her care providers would consider supporting her choices. It is perfectly possible to have discussions about practical issues in a respectful manner: another woman was offered the opportunity to explore whether she was comfortable getting in and out, and using the birth pool. She described this opportunity to test what was right for her as “brilliant”.
“I was told I was a health and safety risk”
As with other studies, women also wanted certain risk information to enable them to make the right decisions for them, particularly in relation to birth. They wanted this to come without judgement, unlike the experience of one participant who was told her decision to choose a vaginal birth was ‘too risky’ and would not have been “allowed” in her obstetrician’s home country.
For some of the women in this study, the risk information they sought for birth had particular purpose, which was not always understood by care providers. This was particularly true when it came to making decisions about pain relief and positions during labour where women’s conditions impacted on their sensitivity to medicine or the positions they could hold. One woman described nearly throwing up medication (“I have never been able to tolerate any sort of [medication]”) and then being told she could not go into the birth pool within twelve hours of taking it. She commented “if that had been made clear to me, I never would have taken it”. All women have legal right to personalised information and discussion to inform their decisions about their care but these women had particular health information needs – material risks – that were not being met.
“I was kind of kneeling over the end of the bed and that was working well for me…They disagreed”.
Other women reported not being listened to about their physical needs during labour – one of the woman interviewed described having a clear idea of what would be safe and comfortable birth positions for her yet ended up in lithotomy: “I was kind of kneeling over the end of the bed and that was working well for me…They disagreed”. Another said she felt that her condition and it’s impact on her were poorly understood – indeed that “I don’t think they truly understood that I had a condition” but that she “couldn’t really make much of a fuss” in labour.
Women in the research commonly described feeling as if they were not treated equally and that their needs were ignored – indeed, only 19% of survey respondents thought that legally required reasonable adjustments had been made to support them – and some describe being given blanket advice that was not suitable for their condition or personalised to them. One woman was told a risk assessment was needed because of her visual impairment but no-one asked her about her condition, what she might want or need, or explained what the risk assessment was aiming to achieve. She described care providers being “more interested in the paperwork than listening to her”. One woman described being excluded from antenatal activities because her needs worried the midwife running the group.
“…you can be seen as less of a person, you know when you have a disability.”
Some women described feeling as if their needs were compartmentalised, with pregnancy-related needs treated with greater urgency than disability-related needs. In other cases, women described feeling as if their conditions were objects of curiosity and feeling judged for being pregnant in the first place: “you can be seen as less of a person, you know when you have a disability. First of all you’re seen different obviously I would say you’re seen different but then for whatever reason they make assumptions and they assume that you are higher risk or that you are, that was a silly thing you did – and got pregnant. How could you put your, how could you put any child through that?”
All women should expect and receive dignified maternity care
This is unacceptable. No-one expects every professional to be an expert in every condition that they see. But all women should expect and receive dignified maternity care that respects them as a person, respects their human rights and treats them as an individual. All women should be given all the information they require to make decisions about their care, acknowledging their own knowledge about their bodies. And all women who need reasonable adjustments under the Equality Act 2010 should receive them.
To achieve this, the authors of the report emphasised the important of continuity of carer and additional time especially at the start of the relationship, to understand the woman’s needs and to ensure that appropriate accommodations and support care put in place. They also recommended that additional support and guidance are provided for maternity care providers about issues relating to disability, such as the management of childbirth pain, and the care of disabled women. To this end, Birthrights will be collating and sharing examples of good practice which already exist and we would be happy to hear from anyone who has an example to share. We also welcome the commitment in the NHS Long Term Plan to the development of Maternal Medicine Networks which aim to “further ensure women with acute and chronic medical problems have timely access to specialist advice and care at all stages of pregnancy”.
The concept of risk was both vital and restrictive for the women in our study. Women must be provided with the risk information that is material to them, with risk assessed in a way that is sensitive to their characteristics. But risk should never be a blunt tool to dehumanise women and leave them feeling that “You’re not a pregnant woman you’re just a body, Because if I was a person to them, if I was a pregnant woman they would have read my file.”.