Black women are dying in pregnancy and childbirth at four times the rate of White women in the UK, yet they remain dramatically underrepresented in the clinical research needed to fix that disparity. This project tackles a specific bottleneck: the moment a research midwife or nurse approaches a Black woman to invite her into a study. The team will work directly with Black mothers, their partners, and the research staff who do the recruiting to understand what cultural, environmental, and communication barriers get in the way. They will then co-develop a set of Principles of Engagement—practical guidance on how to approach, inform, and involve Black women respectfully and effectively. If successful, the Principles will give every NHS research delivery team a tested framework for inclusive recruitment, not just in maternity but potentially across other areas of healthcare. The project also produces infographics for time-sensitive settings and accessible lay summaries in audio, pictorial, and written formats. The immediate impact is a change in how research staff communicate—a shift that could begin to close the gap between who needs better treatments and who gets to help design them.
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Question: What cultural, environmental, and communication processes are crucial for Research Delivery Teams (RDTs; e.g., nurses/midwives) to consider when involving Black women in maternal and neonatal healthcare research? Background: Black women face heightened risks in pregnancy and childbirth, evident in the highest stillbirth rates and a fourfold increased likelihood of maternal death compared to White women, and twice that of Asian women. Addressing these health disparities necessitates an individualised approach. Effective, accepted healthcare innovations for Black women hinge on their active participation in clinical research. However, alarming disparities persist, with Black women significantly underrepresented in clinical research compared to the expected proportions outlined by the Office of National Statistics. Our experience as clinical trialists, and insights from a recent systematic review authored by members of our Study Advisory Group, emphasises the importance of understanding the multifaceted processes influencing Black women s engagement in this field of research. This understanding is pivotal to fostering culturally sensitive communication within RDTs to dispel biases/misconceptions. Aim: In collaboration with partner groups representing the perspectives of (a) RDTs and (b) Black women/their birthing partners, our overarching aim is to formulate Principles of Engagement (PoE) to support RDTs to effectively approach and engage Black women in maternal and neonatal healthcare research. Sub-aims include: 1. Establish a Patient and Public Involvement (PPI) group focused on Black women in maternity and neonatal health. 2. Co-develop a comprehensive understanding of the cultural, environmental, and communication processes critical to engaging Black women in maternal and neonatal health. 3. Collaborate with the PoE Development Group to craft recommended PoE based on the data and collective insights. 4. Identify pathways for implementing the PoE in healthcare settings. Methods: Continuous engagement with our two partner groups occurs throughout. To amplify the voice of Black mothers and expand PPI reach, we will work with Egality Health, a community engagement agency. To identify crucial cultural, environmental, and communication processes, we will conduct targeted literature reviews and host focus groups with key partners, to evaluate the findings for adequacy and generalisability. Insights gained will inform a comprehensive list of PoE recommendations, which will be subject to rating and further refinement through consensus panel workshops. To enhance the impact and sustainability of the PoE, we will host an online dissemination event, sharing our findings with external partner groups, including service managers and commissioners. We will explore opportunities for future collaborations and co-develop accessible lay summaries of our results using different formats (e.g., audio, pictorial, written). Timeline: The project duration is 12-months, PPI occurs throughout. Dissemination: The key deliverable will be PoE, providing guidance for RDTs in effectively communicating maternal and neonatal healthcare research opportunities to Black women. In time-sensitive situations, infographic versions will be crafted as quick-reference aids. Developed with PPI, written, audio, and pictorial lay summaries will ensure accessibility. Pathways for disseminating include, but are not limited to, our dissemination event, engagements with community agencies, the Royal College of Midwives, Include Framework (Trial Forge) and policy makers, alongside peer-reviewed publications, conferences, and strategic use of social media.
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