BRC blog: Making research information more accessible for families
By Morgan Mason
As researchers, we spend a lot of time thinking about how to answer important questions. However, equally, or even more important, is making sure participants in research understand what they are being asked to take part in.
During my PhD, one of the greatest insights I’ve gathered is that applicable research doesn’t happen in a vacuum. It is not shaped by doing research on communities, but by working with them.
My PhD is funded by the NIHR Biomedical Research Centre (BRC): Southampton. It focuses on the evaluation of the Early LifeLab Health Warriors’ programme, a health education programme for primary school children ages 4-11 years old. Through an engaging hands-on curriculum, children learn why health is important using practical, science-based activities.
Additionally, I work with an amazing group, the Early LifeLab team. This includes Donna Lovelock, Rachel Gagen and Natasha Green, who all have experience within primary and secondary schools. They provide primary school teachers with training, and fully resourced activities linked to healthy eating, physical activity, sleep, hygiene and wellbeing.
As part of my evaluation, I’ve used a child-adapted mixed-method approach. This includes questionnaires and creative research activities. My aim is to understand how the children taking part are impacted by the programme.
Importantly, research with children must take into consideration their ability to consent, and receiving parental consent is a requirement for children to participate in the evaluation. This is where I encountered one of the main hurdles of the evaluation.
Understanding the barriers
Early in the study, it became evident that receiving parental consent for the children was a challenge to evaluation recruitment. I was only collecting a quarter of the consent forms sent out for each year group.
Upon school and teacher feedback, the Early LifeLab team and I realised the consent documents were too lengthy. They also contained complex language and were heavy with academic jargon.
To understand how to make the consent documents accessible, we set up two public and patient involvement and engagement sessions (PPIE). These involved a group of parent volunteers from a local primary school taking part in the Early LifeLab programme.
During the sessions, parents reviewed the participant information sheet and consent form. They told us what worked, what didn’t and what information mattered most to them.
The feedback we received was invaluable. Parents wanted to know “Why is this research important?” and “How does it benefit my child?” They also asked to have salient information, such as risks and confidentiality, placed prominently in the documents.
Parents also highlighted something particularly important in a diverse, culturally rich city like Southampton. As English is not the first language for many families, children often help explain information sent home from school.
Therefore, it was clear this issue wasn’t necessarily about children participating in research or lack of information. It was about presenting that information in a way that was easier to understand and more engaging for both parents and children.
From feedback to action
Parents in the PPIE group expressed a desire to have information presented in an engaging format that would enable them to feel connected to what their child was learning. They suggested using a visual approach could help with this endeavour.
This feedback generated the idea to create a fun, informative alternative approach to participant information - a video!
Drawing on our team’s combined experience, we drafted a video script. The main challenge was continuing to make it accessible, while still meeting all the requirements of the University's ethical approval process. This script was then reviewed by the parent PPIE group for feedback.
They suggested having information presented as a realistic, familiar conversation. We did this by having a parent actress ask the questions they found important and using one of our Health Warrior puppets, Buddy, to explain the detailed form.
The creative ideas from the session were incredible. To bring these concepts to life, I contacted Southpoint Films LLC and requested support from the University of Southampton's Faculty of Medicine ethics committee. Funding was sought and provided generously by the BRC's PPIE programme.
The final video featured a conversation between the parent actress and Health Warrior Buddy. This provided engaging, inquisitive participant information in a way that was not only approachable, but also entertaining for children and parents.
To access the video easily, I redesigned the written participant information sheet. A physical and digital copy included key messages highlighted by parents at the top, including a QR code to access the Early LifeLab online portal. There, parents could watch the video and access translation options. Families now could choose a format that worked best for them.
What I learned about involving communities
One thing this project reinforced is that there is no single solution to increasing participation in research.
The relationship between schools and families plays a significant role. I discovered that the schools which actively discuss the research and provide reminders to parents about the evaluation often see greater engagement. Parents' previous experiences with research also makes a difference.
What this collaboration showed was the value of involving the people who will actually use your research materials.
Seeking feedback from parents has been one of the most important things I've done during my PhD. Their insight fundamentally changed how I approach participant information. It helped Early LifeLab create something that was much more relevant to the families we wanted to reach.
As researchers, it's easy to focus on what we think people should know. Instead, integrating the public within the research process encourages us to explore, “How do people actually want to receive this information?”
It was exciting to share this project at this year’s Faculty of Medicine Research Conference. My hope is for others to see that making research more accessible may not require complex solutions. Sometimes, it starts with taking the time to sit down with people, listen, and understand what they need.
