‘Inspiring Stories’ with Rina Cianfaglione
Research Fellow, Clinical and Experimental Sciences
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southampton’s Faculty of Medicine.
What do you do to engage and outreach with the public or patients?
In October 2020, together with Dr Dennis Golm and Dr Jana Kreppner from the Centre of Innovation in Mental Health (CIMH), School of Psychology, and Dr Brigitte Vollmer, FoM (CES) we received funding from PERu for a project called Neurokids.
Neurokids’ aim is to engage children in neuroscience research, in particular we want to develop awareness about psychology, neuroscience and stimulate children’s curiosity in neuroimaging research. The innovative aspect of this project is that children and schools have an active role. Children are encouraged to send/ask us questions about what they want to know about the brain, and together we answer their questions. We have created 2 introduction videos about Neurokids, which will help children with formulating questions. We also have a dedicated padlet; children can send us questions about the brain or if they prefer, they can send us postcards, make a video, or if they prefer, we can have live Q&A sessions.
The overall aim is to teach children about the brain, how scientists study the brain, and common neurodevelopmental disorders. Thereby, reducing stigma towards children with these conditions, and stimulating children’s interest in engaging with neuroscience research.
What has driven you to participate in public engagement or patient involvement?
I have always had an interest in working with the community and with the public in research activities. My areas of research involve; child development, neurodevelopmental disability and family experiences and wellbeing. So, engaging these groups, listening to what they are interested in and what is important and relevant to them, is important for a researcher’s development. It is also important for the quality of the research we carry out.
In 2019, we received funding from AMR for a project looking at neural correlates and neurodevelopmental outcomes in children with neonatal HIE (NENAH), a neurological condition caused by lack of oxygen and blood flow to the brain at the time of birth. Part of this project involves looking at the structure and functions of the brain using MRI techniques. To help children with the MRI scan process, I was exploring ways to improve children’s experience of what can be a frightening experience for everyone, and after researching the internet for resources and videos, I did not find what I was looking for. So, the idea to co-create a video “with the children, for children” emerged. Together with the radiology department at UHS, we created a video about coming to the hospital to have an MRI scan. This video was made together with children and the aims were to share the children’s experiences, and how they felt about having an MRI scan of their brain.
How did you get started with Public Engagement or Patient Involvement?
The idea of Neurokids has developed organically from the MRI video. We always wanted to find a way to involve, and actively engage children, schools and families in our research studies. Funding was available for a PPI project from PERu, so we applied and received the award. The idea is to co-create fun and interactive videos, resources and activities about the brain together with children.
Why do you consider Public Engagement/Patient Involvement to be important?
Outreach activities are essential for research, including the children’s and families’ perspectives and experiences. These will help to develop meaningful research questions, improve the quality of the research, and how we communicate with the public and how we communicate and disseminate findings. For outcomes studies, it will help to develop and design appropriate interventions and understand what is important and relevant for the families and children with whom we conduct research.
What reaction do you get during an engagement event?
It is always difficult to predict what reactions you will have during an outreach event. In general, the experience and reaction has been positive, and in general children always ask lots of questions. Just before Covid entered our lives, together with a Medical Student, we visited one of the primary schools in Southampton during their ‘Health Week’, for some teaching on brain development and brain imaging with MRI. The experience was fantastic. The children were very engaged and at the end of the session, the children asked a lot of questions. Here is an example of questions that they asked: Why do we need an MRI scan? Can animals have an MRI scan? How does an MRI take pictures of my brain? Why is it very loud? Some of these questions were answered during the session, but there were so many questions, that we could not answer them all. So, we made a video answering some of these questions.
In March 2021, we also took part in SOTFES. This year, because of COVID, the festival went digital, which was great and everyone was very excited. Neurokids’ videos and digital resources were accessed by around 40 users, however we had no feedback, so it is difficult to say it was successful or not. I am hopeful that it was children accessing the resources available. I look forward to next year’s SOTFES when, hopefully, the event will be held in person. We will have some very interesting resources and cool experiments for the children to engage in.
In July this year, there were a number of exciting events. Schools started to become interested in Neurokids, and in general were again interested to engage with us. We held a virtual session with an infant school. The reaction of the children was fantastic, they watched a video about the brain, and they were asked to do some fun activities. Although the event was online, the engagement was high, with lots of questions. We are now preparing to introduce Neurokids to a primary school in Southampton. The school wants to place Neurokids into their curriculum, and we will be working with children from Reception to Year 6. This is very exciting, and we are preparing lots of interesting activities and resources for this programme, so watch this space.
What do you feel is the impact of the engagement events, what happens as a result?
Primary school children will be exposed to knowledge and concepts, e.g. anatomy and functions of the brain, neuroplasticity, neurodevelopmental disabilities etc., which they would not normally be exposed to or necessarily learn about during their time in school. Moreover, the children will be exposed to scientific concepts that will enhance their ability to think critically about more complex concepts and understand why people are different. With Neurokids, we are asking children what they want to know about the brain, we listen to their questions and we consequently co-create interactive materials.
Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green.
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