As a community group leader I have been involved with maternity research for several years: linking researchers with small groups of mums and helping to facilitate discussion groups. Mums have been involved in different stages of research and we used this model throughout SHAPES.

As PPI Lead, I was given an opportunity to include mums with a range of maternity service experiences in all stages of the SHAPES study. This has included:

• discussing the question and the aims of the study
• helping with the plain English summary
• attending steering group meetings
• advising on recruiting and working with participants
• developing communication materials
• discussing the key findings and how to communicate these with members of the public as well as expectant parents

Due to the length of the SHAPES study, we wanted to include different mums in the steering group meetings, to add a fresh perspective to the progress of the research. So we created a model to make this as seamless as possible for the mums to be involved and to understand the progress of the study.

With 3 expectant/new parents invited to take part in the steering group meetings, we also had consistency from one mum who was able to attend throughout the study.

• Before each steering group meeting we held a pre-meeting with the PPI members to update them on the study and introduce them to the steering group process. This also provided an opportunity to talk through the presentation slides in advance of the meeting.
• During the steering group meetings, which were held online, all attendees were encouraged to be inclusive by using lay language, straight-forward explanations and avoiding acronyms. The PPI members were welcomed and encouraged to contribute with questions, comments and feedback.
• We also had a post-meeting with the PPI members so they could have another opportunity to ask questions and provide feedback.

Planning and co-ordinating involvement as part of a research team who value and invest in working with mothers to hear their experiences, perspectives and questions has meant that PPI within SHAPES has been a positive experience.

It is an experience I would want to bring to other research projects.
Janine, PPI Lead for the Shapes research project

Why did you want to be involved in SHAPES?

Helen: I’m interested in anything which may help to improve women’s healthcare, especially as this is so under-researched. SHAPES also appealed to me because it focuses on BMI/weight, which is both a sensitive and controversial topic. For me, contributing to this study has meant making things better in some way and that feels important.

Kim: I had such a negative maternity services experience during pregnancy. I didn’t feel understood, my anxiety and mental health was often dismissed and I became aware how important communication, individual experience and being sensitive to someone’s situation and needs can be. Being able to communicate some of this in this research felt meaningful and not a box ticking exercise. I became involved because I wanted to feel like my experience could have some impact to how pregnant women are treated.

What was your experience of being involved in SHAPES like?

Helen: I became involved because Janine asked me. She is a practitioner who was known to me as I had attended her community sessions in pregnancy and with my baby so I trusted that this would be a worthwhile experience. I probably wouldn’t have got involved without that connection as I knew I was in safe hands.

The co-ordination of the involvement was really positive, I didn’t have to liaise with anyone else, it is was all arranged and set up, I just had to turn up: as a mum with a young family, this really made a difference to being able to take part. It was also great to receive payment for my time, I feel like this validated my contribution and it felt like much more than volunteering.

I have been involved in every steering group and I have always felt valued and listened to as the research team were interested in my contributions. It’s also been great to be involved in a longer study, to understand more about the research process, the different people involved, as well as the different considerations and issues around funding and length of the study. It’s also made me aware of the different perspectives and limitations, that’s why I think adding women's voices to it makes a difference because it makes it real.

Kim: The process was really made easy for me to participate because information was sent out in advance, with links to the video sessions and I just needed to turn up. I felt included and valued, like my opinions mattered. I feel like I added a human aspect which I feel can be very much missing from policies. 

Being involved in various steps within Shapes provided different opportunities for me to share my feedback around my experiences of pregnancy, birth and using maternity services.

What did being involved mean for you?

Helen: Reading the papers, listening to the researchers and being asked for my input meant using my brain and being involved in something meaningful, that could really make a difference. It was a great boost to my confidence but I also feel like I was part of something which could impact other women.

Kim: I got to talk to other adults and to be involved in something different, to use my personal experience to add value to women’s research. Adding my voice to this study has felt really important.

What would you say to other parents about being involved in research?

Helen: For me, it was been a really positive experience and involvement was easy so I would encourage other mums to get involved in maternity research projects, to share their experiences, to have a voice and to, hopefully, make changes for other women.

Kim: This has felt like meaningful involvement for me. I got to share my story and my perspective and I feel like that could make a difference to maternity care. Being involved in research could be a really valuable experience for some mums.

"After being approached by Janine to be part of the steering group for this project, I was very happy to take part because the subject of the study was close to me, after being classed as “obese” during my pregnancy. I was keen to not only give my perspective as an overweight pregnant person, but also to see what was being proposed as an alternative to the current screening and treatment process. 

The steering group meeting I attended was 2 hours long; it involved a summary of the process and findings to date. It was easy to follow and there were intervals added in to ask questions or add anything we wished to contribute. I also met with Janine before and after the steering group meeting, which was really helpful. I am keen to see the outcomes from the study as any future changes would maybe affect me if I were to have another child."
Emma, mum of one

“I wanted to be involved with the SHAPES project because I had recently been through maternity care so I knew what the experience was like for expectant mums, and I hoped to be able to give relevant input to improve the study/project/care. I was always well-prepared by Janine ahead of the sessions which helped give me the confidence to contribute my own thoughts and ideas. My input was always valued and it was nice to be kept updated with the progress of the project over time. It was also fun to use my brain in a different way during maternity leave!”
Louise, mum of one

"As someone who felt so thrown in at the deep end when expecting their first child, I found such comfort in Janine and her knowledge that I jumped at the chance to be involved in any research participation where she was involved. After the birth of my second child I felt I had enough experience of the system and process to use my voice for future mums and to help inform research. The SHAPES project was run impeccably with those leading really eager to make a difference and to hear as many aspects as possible. I was always made to feel welcome, heard and like I was contributing to change."
Helen, mum of two

If you would like to get involved in future maternity research, you can contact Janine for more information at: hello@janine-smith.com