29 Sep Service user involvement in maternity and perinatal mental health research
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29 September 2020
Service user involvement in maternity and perinatal mental health research
Agnes Agyepong, parent engagement programme manager at Best Beginnings and Guy’s and St Thomas’ NHS Foundation Trust Maternity Voices Partnership Chair, discusses why Black women are not engaging in research — and what can be done to change this.
Parent engagement programme manager, Best Beginnings · Maternity Voices Partnership Chair, Guy’s and St Thomas’ NHS Foundation Trust · Involvement member, NIHR ARC South London maternity and perinatal mental health theme
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 halt by the Coronavirus pandemic, the global Black Lives Matter movement, and the 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, these health disparities are not centred within one health discipline — they permeate across the board. Within maternity and perinatal mental health there is no exception. Despite the Royal College of Gynaecology and Obstetrics 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 55% of hospitalisations of pregnant women with Covid-19 in the UK — even though they make up approximately 13% of the UK population.
Even prior to the pandemic, the MBRRACE report found that Black women were five times more likely to die in childbirth than white women, and that their babies were twice as likely to be stillborn. This led to the launch of the FiveXMore Campaign, a grassroots movement founded by two Black mothers, Clotilde Abe and Tinuke Awe.
Why “hard to reach” misses the point
Within research circles, attempts to uncover “why?” have often hit a roadblock, with terms like “hard to reach communities” waved around to explain why researchers find 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, I believe I am well placed 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.
If someone were to ask me why it is hard to reach and engage a Black mother for research purposes, my 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 — 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.
Agnes Agyepong
These networks are key to unlocking engagement within the Black community, but they need to know the research is not performative and will lead to meaningful change before they can endorse or get behind it. And if these networks do get behind the research, they need to be adequately funded, resourced and recognised.
A history that cannot be ignored
This response is not an anomaly. For centuries, the experiences of Black and Brown women have been extracted at their expense within obstetric research. The founding father of gynaecology, James Marion Sims, created the surgical technique that repaired obstetrical fistula at the cost of experimenting on Black enslaved women in America without anaesthesia. Francois Marie Prevost pioneered caesarean section surgeries through repeated experimentation on enslaved women’s bodies.
These horrendous early examples 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. The first large-scale human trial of the birth control pill was carried out in Puerto Rico in the 1950s with women who had no idea they were participating in a clinical trial.
Even in 2020, a fund to research Covid and BAME communities 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 research leadership teams and ensuring equity within research funding.
How can we expect Black women to take researchers seriously when 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, with the lack of Black researchers in senior positions, the current structures by default reinforce a colonialist hierarchy — where white researcher teams apply for and receive funding and recognition, while the Black networks and users who underpin the research are left at the tail end, often with little knowledge of how their assistance has led to change.
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.
The networks researchers need to engage with
Networks supporting and amplifying Black motherhood should be the cornerstone of any research team trying to engage with this demographic. These include:
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Young Mums Support Network — founded by Fiona Smalls
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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 Instagram followers and a highly popular podcast
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The Nova Network — founded by Toyin Adeyinka, MVP Chair for Lewisham and Greenwich NHS Trust; a peer support group for Black, Asian and Minority Ethnic MVP Chairs in the UK
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Candice Brathwaite — Sunday Times bestselling author of I Am Not Your Baby Mother, who commands considerable respect among Black mothers in the UK
These networks predominantly reside on Instagram. Twitter seems to be researchers’ preferred social media tool, whereas the target demographic for maternity research are mostly on Instagram. Social media can be a vital tool for authentic service user engagement — but researchers are missing a huge opportunity if they are not utilising these platforms properly.
The questions research teams must ask themselves
If service user involvement within research in the Black motherhood community is to increase, there has to be a paradigm shift — not only in engagement, but in the research communities’ overall approach. Research teams should ask:
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?
How are we collaborating with and amplifying the voices of those already doing the grassroots work within the community?
About the author
Parent engagement programme manager at Best Beginnings · Maternity Voices Partnership Chair at Guy’s and St Thomas’ NHS Foundation Trust · Involvement member, NIHR ARC South London maternity and perinatal mental health theme
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Original source: arc-sl.nihr.ac.uk — NIHR ARC South London legacy content archived June 2026.