The killing of George Floyd by policeman in Minneapolis, USA, has led to an international movement of #BlackLivesMatter demonstrations across the world. A few weeks ago, new statistics published in the UK showed that more people from black, Asian and minority ethnic (BAME) groups have been dying from Covid-19 than white people, with BAME healthcare workers hardest hit: GPs, care home staff, porters, nurses, midwives, hospital doctors, ambulance workers. The most recent MBRRACE report (Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK, 2019), revealed that women from black, Asian or mixed ethnic groups or who live in deprived areas have higher maternal death rates, and that black women are five times more likely to die during pregnancy and in the six weeks after childbirth than white women, and Asian women twice as likely. At the time of writing, a petition to Parliament set up in response by the #FiveXmore maternity campaign has been signed more than 159,000 times.
It was against this background, that the maternity and perinatal mental health theme at ARC South London organised two online engagement in research events in mid-June, aimed at local women. We wanted to want to make sure that we had good representation of BAME women and of relevant organisations and individuals living in social disadvantage, with socially complex lives or with experience perinatal mental health issues. To achieve this, we reached out to particular individuals and groups, using our direct contacts and social media. Over 60 people registered to join one of the Zoom meetings, which each lasted 60-90 minutes. The aim was for maternity and perinatal mental health researchers to engage with women in south London, and with networks, groups and organisations working with them, to discuss how to collaborate. Researchers wanted to find out about women’s priorities and concerns, and their thoughts on the ARC’s planned maternity and perinatal mental health research.
A little under half of those registered joined the meetings (screenshot from one of the meetings above). This is not unusual for free-to-attend, online events. For parents with young children and pregnant women, plans often need to be changed at short notice. One evening and one afternoon event was offered for participants’ convenience and to see which would prove more popular.
The events involved representatives from a number of key organisations: Prosperitys, a south London-based doula organisation; Birth Companions, which works to meet the needs of perinatal women in the most difficult and disadvantaged circumstances; Mothers for Mothers, a postnatal depression support group; Mummy’s Day Out, a grassroots, social support network for mothers; Perinatal Mental Health Partnership, founded to promote awareness of perinatal mental health; Make Births Better, an organisation committed to reducing birth trauma; and Desperate Artwives, an artists’ collective. There were four London Maternity Voices Partnerships represented, parents with young children, women with an interest in breastfeeding support, two service user contributors to the national Maternity Transformation Programme, a pregnant woman, and four black professionals working in healthcare or research. Overall, a majority of the women were from BAME backgrounds and several were involved with the FiveXmore campaign. Researchers and attendees enjoyed exploring the issues together.
Researchers explained that they would be addressing known current issues in London: poorer outcomes for women and babies living in areas of social disadvantage, and from black, Asian and minority ethnic groups, and following up on good practice, such as continuity of care. The researchers explained that the ARC programme aims to help reduce health inequities and have a positive impact on the health and wellbeing of local women and families. Important questions for the theme’s applied health researchers include: Why do some groups have poorer outcomes? What models of care can help? How can care and outcomes for women with mental illness be improved?
Early in the discussion, researchers were asked: ‘Are you using any community groups?’ And were pressed: ‘How are you going to hear the real issues from those living in the most disadvantaged areas or being discriminated against?’ The clear message was that researchers need to involve these groups in order to hear how it really is. Peer research using participatory methods was recommended as a way to empower communities and enable them to have a voice. This was emphasised by at least three people and trained maternity peer researchers in north London were cited as a good example of approach this in action.
Two participants felt that areas with greater levels of poverty in London, naming Lewisham and Southwark, have less well-resourced health services than wealthier areas. Having lived in different boroughs, one said: ‘It’s completely different in different areas … One issue I see in terms of (BAME) inequality is that some boroughs have poorer services.’ She felt that people sometimes didn’t realise they were missing out if they hadn’t experienced better quality somewhere else: ‘How do you know what standard of care you can expect?’ She introduced the concept of ‘weathering’ which originated in the USA, saying that black people experienced multiple layers of disadvantage: ‘Weathering has an effect on us like a drop of water on wood, slowly eroding us. Whether its maternity care or cancer, it goes a long way back.’ Others agreed, one said: ‘It’s an institutional, structural issue; influenced by money, influenced by race.’ She asked whether people had seen the YouTube video from the USA, Weathering and Health Inequity which describes ‘chronic exposure to racism’ that she feels is relevant in the UK.
Participants felt that attitudes and expectations were important in explaining inequity of outcome, too. They referred to long-entrenched attitudes among NHS staff and in families that blocked opportunities for empowerment, access to choices and quality care. They said that cultural expectations sometimes reinforce lower health expectations, resignation and lack of trust in health services. They felt this could be dismantled through a combination of tackling structural inequalities, addressing poor staff behaviours, and empowering women and communities, supporting and working through community networks. Continuity of midwife care was valued, though it was suggested that a weak link was when it did not occur during labour and birth, or if a woman attended a maternity assessment unit with a problem for triage.
As well as a concern about racial inequalities, many shared an interest in mental health and mental illness. The sense of stigma that persists in some cultural groups, particularly in older generations, was highlighted as problematic. One participant raised the importance of addressing ‘lower to moderate mental health needs (as well as severe illness).’ Another stressed the need for more black women’s childbirth networks, and for positive preventative approaches to preparing for birth that black women will see as welcoming and appropriate for them.
One of the key points to emerge was that there is no hard-and-fast line between researchers and service users. Many women organise themselves to take higher education courses, become activists, practitioners or ‘knowledge intermediaries’, a term used to describe people who ‘inhabit a professional space between academics and non-academics’ (Meagher and Lyall, 2013). Two of the researchers on the ARC team have young children and the patient and public involvement (PPI) leads on the ARC programme were drawn into their roles through a combination of personal maternity experiences, research, and work in charities aiming for improved perinatal experiences and quality of care.
The importance of working with inner-city communities and black networks was emphasised repeatedly as the way for researchers to ensure research is most finely tuned to. The participants from London and the organisations and support networks contributing to the events, are able to reach those communities. This echoes a statement by Geoff Mulgan, the former CEO of NESTA, the social innovation foundation, who said:
Again and again, I’m struck by the importance of the intermediation role, the translator role, which I think we still undervalue… We over-privilege someone with very deep knowledge over someone who’s very good at orchestrating networks to pull in multiple types of useful knowledge.
Interestingly, the discussions focused more on the long-term structural situation for black citizens than on changes to services or additional risks during the Covid-19 pandemic. To this group, additional risks during the current health crisis were predicated on structural inequalities and racism. However, the concerns of women with perinatal mental health issues, and those living with multiple social disadvantage and other ethnicities were less well covered.
The ARC researchers felt that the online engagement events had worked well overall. More people attended than would have come to a face-to-face meeting, based on previous experience, and there was greater diversity. Several mothers attending had their children with them in their living rooms and one person was able to stop her car at the side of the road to participate. Professionals joined in from Scotland, Nigeria and Washington DC, sharing observations and personal stories, adding to the richness of the discussion.
All of the London-based service users, community members and charity representatives attending are keen to continue working with the ARC’s research theme. Completion of diversity monitoring forms for an emerging core PPI group shows that seven are black women, five are white and one mixed race, and a majority were interested in perinatal mental health. Participants have been offered PPI payments in online vouchers in a bid to speed up the claims and payment process.
A lot of work is involved in nurturing and growing reciprocal relationships, but the rewards of engaging with such an important and knowledgeable group of people is vast – and only just beginning. We are setting up an overarching PPI strategy group for the theme, a maternity advisory group to sit alongside the existing perinatal mental health advisory group, and we will also support a broader network of collaborators. Our intention is to co-produce a PPI strategy and to provide training for service users and researchers to enable them to develop co-designed projects with community involvement from the earliest stages of research, going through to the writing up and sharing of results.
The women attending the events repeatedly highlighted the importance of participatory research methods, and we will be seeking new sources of funding for this kind of research. We expect that we can do a lot together over the next five years, and we will be focusing our attention on the role of knowledge intermediaries as one theme in our work.
Mary Newburn and the ARC’s maternity and perinatal mental health co-production group (Clotilde Abe, Agnes Agepong, Lucy Angell John, Sakina Ballard, Leah Bedward, Rachael Buabeng, Lauren Carson, Clare Dolman, Abigail Easter, Cristina Fernandez Turienzo, Michele Harris-Tafri, Michele Howard, Anna Horn, Louise Howard, Hannah Rayment Jones, Jane Sandall, Nick Sarson, Sergio A. Silverio, Maria Viner) with international collaborators Heba Farajallah, Shamella Joy and Olajumoke Ojeleye.