A new challenge – making our research more accessible
Published on Wednesday, 15 September 2021
Involving and consulting parents and families has been an important part of NPEU's work for many years. We want to involve and engage people from as many different backgrounds as possible when we are planning research studies, designing the projects and sharing the results, but we know that we don't always get it quite right.
However, it's vital that we do get this right. This is partly about fairness and equity. It's also important that we ask research questions that matter to the women, parents and families and that our research findings are meaningful and accessible to those people whom they concern. We know that the people we hear from less often are also the ones who are most likely to experience poor health and complications in pregnancy, birth and postnatally.
So, in June we ran a series of listening groups to find out what more we could do to support people to influence, take part in and use our research. Twenty people took up our invitation to join these groups, speaking on behalf of fathers, parents of Black and South Asian ethnicity, parents with physical disabilities, teenage parents, those experiencing social and economic deprivation and parents with learning disabilities.
We got some amazing insights into how people respond to research and what we need to do so that people feel they can get involved in planning research, take part in the research, or just be aware of what we do. This might include simply knowing about it (attending a science fair, reading a blog or news article, listening to a podcast or online talk - what we call engagement); becoming involved in it (influencing what we research and how we do it), or participating in it (actually taking part).
Five things really stood out from the conversations:
Relationships are at the heart of all good public involvement and engagement. This is even more important for people who are less likely to be involved in research, who may distrust anything they perceive as being part of the establishment, or who may simply not see the relevance of research to them and their lives.
Involve people from the beginning
Our contributors told us that they sometimes felt exploited, and that they were only being 'brought out' or contacted when it was convenient to researchers. People want to be seen as equal partners in the research process, so early involvement in a project is a key part of building trust.
People have busy lives and a lot to cope with, but they do want to see change. People told us that they wanted to know how health research might contribute to changing policies and care locally, for their friends, families and communities. This was critical to catching their interest and getting them engaged with research.
Use simple communications
Many people feel bombarded by information in their everyday lives. Not everyone we want to involve or hear from is a native English speaker, and some people struggle with the written word. We need to be more thoughtful and innovative in how we communicate, whether it's using animations, infographics or much simpler language to describe things.
Imagine life in our shoes
Research is probably not as important or interesting to women, parents and families as it is to researchers themselves, especially when they have other more pressing priorities like finding a home, a job or support with their babies and children. People told us that we need to think about the pressures on their lives and make engagement, involvement and participation as easy as possible for them. That means thinking about the particular community groups they are involved with, or social media platforms they use, and approaching them with invitations that mention their particular circumstances, such as having a disability.
What we are doing......
We're now developing resources for our researchers to support them in improving their public involvement and engagement. Please see our updated Blog about where to find those resources.
A huge thank you to everyone who took part, and to the University of Oxford's Departmental Public Engagement with Research Seed Fund, who funded this project.
- Auntie Pam's pregnancy peer support – Lisa Akester
- Maternity Voices Partnership – Agnes Agyepong
- Birth Companions – Kate Chivers
- Black Mums Upfront - Nana-Adwoa Mbeutcha
- Dads in Mind – Adrian Pell
- Fatherhood Institute – Kathy Jones
- Fathers Reaching Out – Mark Williams
- Future Men – Chris Stein
- Happy MOMents – Sumayya Mulla
- Motherhood Group – Sandra Igwe
- Mums Like Us – Sally Darby
- Muslim Bereavement Support Services – Sabina Patel
- National Maternity Voices – Mo Ade
- NDPH Public Involvement Panel – Scott Williams
- Parents1st UK – Celia Suppiah
- St Michael's Fellowship – Sue Pettigrew
- Shoreditch Trust – Jacqui Roberts
- Willow's Rainbow Box – Amneet Graham
- Young parents advocate – Harriet Williams