“It did mean a lot”: What public engagement with teenage mothers taught us about our research.
This blog has been written by Dr. Katie Harron, Senior Lecturer and Sir Henry Wellcome Fellow based in the Child Health Informatics Group.
Around 20,000 babies are born to teenage mothers in England each year (about 1 in every 25 births). Teenage mothers face a number of challenges, including lower levels of education, less stable careers and lower income than most other older mothers. Whilst teenage motherhood is a positive experience for many, it is also linked to unhealthy behaviours during pregnancy (e.g. smoking), lower levels of prenatal care, and worse physical and mental health throughout childhood and beyond. For these reasons, an intensive early home visiting service called the Family Nurse Partnership (FNP) was introduced in England in 2007, aiming to improve outcomes of teenage pregnancies.
As the FNP programme evolves and adapts over time, so too have the methods used to evaluate its effectiveness. Administrative data is increasingly being used to help inform policy, and linking FNP data with information routinely collected from hospitals and schools offers an appealing way to evaluate the programme on a larger scale than has previously been possible. To help us develop this study, we held a workshop to engage with FNP participants and family nurses.
The workshop aimed to provide mothers with the most up to date research into FNP, offer an opportunity for mothers to challenge the current research agenda and raise new issues, and explore attitudes about using administrative data for research. We incorporated a range of elements including visual presentations, group exercises and participant discussion. The exercises helped mothers open up about the most important aspects of the FNP programme to them (Figure 1.). Mothers said they would like more information about immunisations, more emotional support, and mother groups with family nurses in rotating locations. The discussion highlighted concerns about the stigmatisation of being a young mother in society, and mothers talked about different experiences and mechanisms for building confidence and interacting with other or older mothers (e.g. having a buddy system).
We used flip charts labelled ‘+’, ‘-‘ and ‘interesting’ to facilitate collective discussion about what mothers perceived as positive or negative elements of using administrative data for research, and what they would like to know more about. Positive ideas focused around mothers liking to share their data, especially when it helped them, or could help others. Negative ideas included the risk of being put into a wrong category, or prompting worry that would not otherwise have been there (e.g. around safeguarding issues). ‘Interesting’ ideas included questions about why data were not already linked up across services, how to find out what data is being used for, and feedback on how the impact of research using their data. We ranked ideas about how mothers would like to see research disseminated, and how they would like to be involved in shaping research in the future. Ideas generated from this included a need to include dads in research, and innovative ways to feedback results of research (including blogs and social media).
Did we succeed?
At the start of the workshop, we asked participants to stand up and place themselves on an imaginary spectrum line across the room according to how confident they felt in their knowledge and understanding of FNP research. The exercise was repeated at the end of the session, and we compared photos of before versus after, to help us discuss what we had learnt. The ‘after’ photo showed participants bunching up at the confident end of the spectrum. Encouragingly, one of the young mothers has agreed to sit on our Study Steering Committee, and will continue to be actively involved in the research. In an email after the event, she reflected positively: “It did mean a lot to understand why the family nurses were there for us rather than the normal health visitors. We got a lot of talk about data controls but we didn’t actually understand where our data was actually going and how it actually helped progress the programme”.
Personally, I valued the opportunity to hear young mothers’ voices, to understand their experiences, and discuss the perceived impact of their involvement in the programme. Identifying participants’ priorities for the direction of research into FNP has helped me to think about my research in a new way. We’re still trying to put into practice some of the ideas from the event, including more public engagement through social media. The experience has also given me a fresh appreciation of public engagement more generally. It is so much more than a box ticking exercise, and I know that the continuing involvement of the public in my research will enrich my work in many ways.
Teenage pregnancy rates in England have more than halved over the past decade, with the rate of conceptions per 1000 women aged 15-17 falling from 41.6 to 17.9 between 2007-2017. However, negative stereotypes, stigma and discrimination continue to dominate teenage experiences of motherhood. Dialogue with teenage mothers is essential in helping design and evaluate interventions that are effective in supporting young families, and carefully designed public engagement that inform, involve and empower young mothers can offering valuable insights for researchers.