Lived experience in maternity research isn’t just about inclusion, it’s about improving care and outcomes for the women and their families.
Over the last 10 years, I have worked with hundreds of mums, who have helped to inform, guide and shape research projects.
What is lived experience involvement?
Parents and families can contribute to research in meaningful ways, not as participants being researched but as contributors, sharing their experience and perspective to inform projects.
Involvement and engagement in research can include:
- helping to decide what research questions matter most?
- shaping study design
- advising on sensitive approaches
- creating and reviewing patient and public information
- sharing findings
- being part of an advisory group
It is a core component and a standard of good practice in health and care research.
Why involvement matters in maternity research?
Maternity care impacts everyone and every family can have a different experience depending on issues such as: ethnicity, finances, access to services, language, health and disability and previous birth experiences.
Without women’s voices, research can miss key factors and human experiences. When women share their stories, research becomes more grounded, relevant and equitable.
Effective involvement
For involvement to make a difference, it needs to be more than asking someone to review a document. Meaningful involvement is about speaking to women at all stages of a research project, creating safe spaces for these conversations and providing updates and feedback.
The impact of involvement
Studies shaped by lived experience involvement can:
- ask more relevant questions
- use clearer, accessible language
- improve participation in research
- produce and share key findings
- strengthen trust and relationships with researchers
- develop research informed communities
Women are knowledge providers rather than just service users. Involvement can also have a positive impact on the women who take part. Confidence, self-esteem and value can some from informing projects and working with research teams.
I am creating a parent panel of mums
If you are interested in informing and shaping different maternity research projects, I will share information and opportunities with you.
Your insights and experience, whether positive, challenging or complex, can help to improve care for future families.
For more information and to join the parent panel, you can send me a quick message. And let me know if you have any questions.
Your information will only be used to keep you informed about research projects. It will not be shared with anyone else.
antenatal & postnatal specialist 