Co-producing principles of engagement to improve the inclusion of black women in UK maternity and neonatal research: a qualitative study

Abstract

Black women in the United Kingdom persistently experience poor health outcomes in pregnancy and childbirth compared to white women. These healthcare inequities have multiple causalities, and are rooted in intersecting structural, systemic, institutional and sociocultural factors. This is exemplified by the underrepresentation of Black women in healthcare research. Mistrust in research, shaped by historical exploitation and contemporary discrimination, alongside organisational barriers within research delivery, continues to limit equitable research participation. To critically explore how maternity and neonatal research opportunities are offered, understood, and experienced by Black women and research delivery teams, and to co-produce Principles of Engagement (PoE) to support more inclusive research practices. An exploratory qualitative design was employed, informed by the Double Diamond framework. In the discover phase, seven online focus groups were conducted with Black women and community representatives ( n  = 26), as well as research midwives ( n  = 24). Data was analysed using reflexive thematic analysis to define key themes. These findings, alongside patient and public involvement and engagement (PPIE) input, and evidence from a recent systematic review, informed the develop phase, generating draft Principles of Engagement. In the deliver phase, these principles were iteratively refined, discussed, and rated through three online consensus workshops with stakeholders ( n  = 20). Four interrelated themes were generated from the focus groups: (1) Trust as a precondition for ethical participation; (2) Making research inclusive and accessible; (3) Power, agency and relational decision-making; and (4) Motivation and value of participation. During subsequent consensus workshops, eight Principles of Engagement were generated; all eight principles were rated as 100% important in the final consensus round. Research engagement was found to be socially negotiated and structurally shaped rather than a solely individual choice. Inclusive intent alone was often insufficient without resourced structural support and relational accountability. Our findings have been translated into novel, co-produced and system-ready principles of engagement which aim to advance equity in UK maternity and neonatal research. Embedding these principles in research practice has the potential to improve trust between clinicians and Black women, widen research participation and improve the fairness, transparency, and relevance of maternity research.