Community Engagement and Involvement (CEI) refers to engaging patients and members of the public in research, so they can provide their input in the design, implementation and dissemination of research and services affecting them, improving the quality and relevance of research (INVOLVE).
CEI has been an integral part of our work with our partners in Kenya, Malawi, Tanzania, Uganda, Zambia and Zimbabwe. Partners from LAMRN have worked with the UK team to identify participants for CEI groups in each country. The groups comprise bereaved parents from a variety of backgrounds who have experience of stillbirth and newborn death and have recently used maternity services. Across the network these parents share a willingness to use their own experiences to support research which aims to improve services for others in the future.
Our partners in each country have delivered training to CEI groups to help them understand the research process. Each group nominated leaders with a remit to link the research team with target communities. CEI groups meet regularly and interact with local and UK research teams. The groups and individuals have gained confidence through the process and have made important contributions to all stages of the research process. Members have enthusiastically embraced their important role in the development of stillbirth research, working together towards change that will positively impact on outcomes for women and families in the future.
How has CEI played a role in our research?
CEI has already delivered positive results in our partner countries. For instance, in Uganda, the group reviewed and improved qualitative research interview topic guides, so that interviews were conducted in a sensitive way and questions were asked in a way that they were easy to understand for women and their partners. The CEI group in Kenya have helped the research team interpret data, confirming the most important findings resonating with their own experiences of care.
In each country the CEI groups inform research and help to develop interventions for the next phase of the programme. Participants represent their groups at country stakeholder meetings.
How has CEI raised awareness of stillbirth in communities?
CEI groups have helped to raise awareness of stillbirth in local communities by speaking at community and church meetings. They have been influential in raising the issue with local leaders, with the Zambia group producing a play around stigma women face in communities. This has helped to reduce some of the stigma associated with discussing stillbirth. Our CEI groups are also represented on country stakeholder groups.