Women from ethnic minority groups are also more likely to experience other complications in pregnancy and report poorer experiences of care. Discrimination and structural racism will contribute to these inequalities, which must be addressed by organisations. Government and professional groups call for research to be undertaken to understand additional reasons which may contribute to inequalities, and to guide improved care.
However, it is recognised people from ethnic minority backgrounds are not represented in research as often as those from white British backgrounds. This can mean the research which care is based on may not apply to people from ethnic minority groups.
There is published guidance for those who design research to make it accessible for people from ethnic minority groups, but there is little advice for staff who work in research delivery recruiting to trials designed by others. Guidance is needed for those that approach and recruit participants to better facilitate participation from ethnic minority groups.
This research aims to co-design a toolkit or guidance which can be used to improve the inclusion of women from ethnic minority backgrounds in maternity research. It is hoped this will enable the research that aims to improves care, to be applicable to the population who currently experience the poorest outcomes.
A Participatory Action Research (PAR) approach will be used to co-develop the resource which can be used to improve inclusion in maternity research. The PAR approach works with the community to make sure the research is guided by those who it hopes to benefit. Women and birthing people from ethnic minority backgrounds will be part of the project team as peer researchers. They will be involved throughout the entire project, including in the design of the research questions, carrying out recruitment of participants and facilitating focus groups and interviews, and interpreting and analysing findings.
The first stages of the project will investigate what influences the participation of women from ethnic minority groups in research. This will be done through focus groups and interviews to explore the perceptions of those that have used maternity services, research delivery and clinical staff, and those who design the studies.
The findings will be analysed to identify key themes, which will be developed into questions. These will be presented at a World Café (WC) event attended by participants from the first stages. Participants will rotate through a series of round table discussions to explore solutions to the questions presented. The findings of the WC will be analysed and refined with the peer researchers, to co-develop a resource that can be used by research delivery staff in maternity settings to improve the recruitment of ethnically diverse women.
Homerton Healthcare NHS Foundation Trust, Leeds Teaching Hospitals NHS Trust, Reproductive Health and Childbirth National Research Champions
The initial research proposal and funding applications was developed through patient and public involvement and engagement. The project lead attended an ARC South London Involvement in Research event where she discussed the project with community members, and the equity, diversity and inclusion lead. Initially the research proposal was an in-depth exploration of the factors which influenced participation in maternity research for those from ethnic minority groups.
The public members of the group gave clear feedback that they did not want another report of barriers, but instead work needed to be conducted to initiate a change. This feedback led to changing the focus of the project to developing a concrete output which could be used to improve representation.
Peer researchers form part of the research team. These are members of the local community, who have experienced maternity services and are from different ethnic minority groups. They will be involved in the ethics applications, design of recruitment adverts and participant information sheets, development of topic guides, recruitment, data collection, analysis, and dissemination. To enable involvement, they will receive training in research methods, with a particular focus on facilitation of focus groups and thematic analysis.
The project has been costed to ensure the peer researchers are reimbursed for all their time, travel expenses, and childcare if required. Payments have also been incorporated for dissemination activities, including presenting at a conference. Members will be asked to be co-author on publications from the project, ensuring recognition of their contribution. To ensure mutual benefit for the peer researchers, discussions will be undertaken to identify any other elements they may want to gain from their involvement.
By facilitating the inclusion of ethnic minority women in maternity research, it ensures results of studies can be applied to this population. In the long term this can contribute to reducing inequalities.
The project is funded by the NIHR. It was adopted by ARC South London Executive in November 2023. The project will run from January 2024 to January 2026.