29 Sep 2020

At no time in British history has there been such a keen interest in the Black experience of maternity and perinatal care. With the world ground to a sudden halt by the Coronavirus pandemic, the global Black Lives Matter movement and the shocking revelation that people from Black, Asian and Minority Ethnic communities are more likely to develop serious complications and die from Coronavirus, many have been asking the important question, why?

On closer inspection we uncover that these health disparities are not particularly centred within one health discipline, but permeate across the board, and within maternity and perinatal mental health there is no exception. For example, despite the Royal College of Gynaecology and Obstetrics and the UK government stating that pregnant women are at no increased risk of catching or developing serious complications from Covid-19, by May 2020, Black, Asian and Minority Ethnic pregnant women made up a staggering 55% of hospitalisations of pregnant women with Covid-19 in the UK, even though they make up approximately 13% of the UK population. Again, the usual chorus of “why?” is echoed around, but for those that come from these communities these disparities are not a total surprise.

Even prior to the current pandemic the MBRRACE report found that Black women were five times more likely to die in childbirth than white women and that our babies were twice as likely to be stillborn, leading to the launch of the FiveXMore Campaign, a grassroots movement founded by two Black mothers, Clotilde Abe and Tinuke Awe.

Within research circles the need to uncover “why?” in any meaningful way has often hit a roadblock and terms like “hard to reach communities” waved around to explain why researchers have found it challenging to engage with Black, Asian and Minority Ethnic mothers and mothers to be.

I am working with the maternity and perinatal mental health theme and as a Black mother myself with three children, two of whom are still toddlers, I believe I am well versed to give input into the Black experience of service user involvement, our challenges and potential ways forward. And although I do not purport to speak on behalf of every Black mother, I know a large swathe will resonate with what I am about to write.

Agnes Agyepong

Firstly, the terms in itself I find quite humorous. If someone was to ask me the question as to why it is hard to reach and engage with a Black mother, like myself as a service user for research purposes, my simple response would be, it depends who is asking? If you are a researcher who has no connection to the community and attempts to have no meaningful engagement, and is solely motivated to use our networks, knowledge and experiences to gain funding to write a swanky publication, be invited to speak at prestigious institutions about the “ground breaking findings” uncovered on the back of our lived experiences, with a few tokenistic gestures thrown into the mix, to then disappear into the ether without any attempt to actually act on the findings or champion our causes, then the simple answer is you would have better luck flying to Mars on a paper plane.

These networks are key to untapping engagement within the Black community, but they need to know the research is not performative and is really going to lead to meaningful change before they can endorse or get behind it, and if these networks do get behind then they need to be adequately funded, resourced and recognised.

Agnes Agyepong

Agnes Agyepong

You see, my response is not an anomaly. For decades, scrap that, for centuries the experiences of Black and Brown women have been extracted at our expense within obstetric research. Take the founding father of gynaecology James Marion Sims, who created the surgical technique that repaired obstetrical fistula at the cost of experimenting on a group of Black enslaved women in America without anaesthesia. Or Francois Marie Prevost who pioneered caesarean section surgeries on, again, American enslaved women’s bodies through repeated experimentation.

Understandably these horrendous early examples (and there are many many more) of “service user involvement” of Black and Brown women for research purposes have set a tone, on a deep structural level, of distrust within the Black community. As slavery ended, the exploitation of Black women for obstetric research did not cease. Let’s take birth control, for example. The first large-scale human trial of the birth control pill was carried out in Puerto Rico in the 1950s with women who knew that the pill prevented pregnancy, but had no idea that it was experimental or that by using it they were taking part in a clinical trial, which like all clinical trials carries risks.

Even in 2020 modern Britain, Black women’s knowledge and experiences are still being extracted in plain daylight for research purposes. It was Natasha Smith, Founder of The Women’s Health and well-being initiative and a Black mother of two herself, who first brought to my attention that a fund to research Covid and BAME communities was awarded £0 from a pool of £4.3 million to Black academic leads, despite Black academic leads applying to the fund.

What needs to be understood is that Black mothers are out there. Black mothers want to be engaged. And we want to be engaged in a way that leads to actionable outcomes and an uplift in our communities. What we don’t want is to be exploited. It is this fear of exploitation that makes Black women hard to reach.

So how can we overcome this?

First, and glaringly obvious, is having Black lead researchers within the research leadership teams and ensuring equity within research funding. I remember in 2017 there was global outcry when Donald Trump met with 30 men to discuss the future of maternity care under a new health bill. The picture of that meeting was plastered around news circuits across the world. Why? Because people could not get their head around the fact that there were no women around the table leading the conversation on maternal health. Many American women lamented that they could not take that bill seriously as their voices were not included.

Let’s take this scenario and now apply it to the research world. How can we expect Black women to take researchers seriously when, like the Trump scenario, no one leading this charge looks like them? If there is a true desire for service user involvement within Black communities then this needs to be visible and reflective in the research teams. 

Second, and this is more a lead on from my first point, with the lack of Black researchers in senior positions the current structures by default reinforce a sort of colonialist hierarchy where there are white researcher teams at the top, applying and receiving funding, gaining renowned recognition for their findings and resourced to do so, while leaving the Black networks and then their users who underpin the research at the tail end. More often than not the participants also have little knowledge of how the assistance they have provided has led to change.

Networks supporting and amplifying Black motherhood should be the cornerstone to any research teams trying to engage with this demographic. Networks like the Young Mums Support Network founded by Fiona Smalls or Dope Black Mums founded by Nina Malone, Carina White, Natalie Duvall, Endy Mckay and Nana Adwoa Mbeutcha, a digital safe space for Black motherhood with nearly 20,000 followers on Instagram alone and a highly popular podcast by the same name. There are also individuals such as Candice Brathwaite, a Sunday Times bestseller who wrote the critically acclaimed book “I am not your Baby Mother” and who commands the respect of Black mothers in the UK.

These networks and individuals predominantly reside on Instagram. I believe that social media is a vital tool to engage mothers, but what I find surprising is that Twitter seems to be researchers preferred social media tool, whereas the target demographic for maternity research are mostly over on Instagram. Social media as a whole can be a great tool for service user engagement IF the engagement is truly authentic and trust is established. And researchers are missing a huge mark if they are not utilising these platforms properly. Toyin Adeyinka, a mother and the Maternity Voices Partnership Chair (MVP) for Lewisham and Greenwich NHS Trust, founded The Nova Network, a peer support group for Black, Asian and Minority Ethnic MVP Chairs in the UK. How are researchers engaging with Black Chairs and members of the MVPs?

If service user involvement within research in the Black motherhood community is to increase, then there has to be a paradigm shift not only in engagement, but also within the research communities’ approach. Ask yourselves, are our leadership teams reflective of the types of audiences we are trying to reach? What Black researchers are we working with on this project? What Black networks are we reaching out to and co-producing with? Are we funding our partners adequately? Is our approach transactional or relationship led and how are we collaborating with and amplifying the voices of those who are already doing the grassroots work within the community?

Agnes Agyepong bio 

Twitter - @agnes_agyepong