Patient and Public Involvement
Co-production of research priorities for infant epilepsy: the Brain development in Early Epilepsy Parent Priorities (BEE-PP) Project.
BEE-PP Parent Priorities Video
This video animation was created in collaboration with parents/caregivers who took part in the BEE-PP focus group to demonstrate why better understanding the lived experiences of families with children with early-onset epilepsy is so important.
The goal of the focus group was to provide a safe and open space for parents to share their personal experiences, thoughts and opinions. This allowed us to gain a clearer insight into the impact of childhood epilepsy on family wellbeing and access to support.
We documented this to increase awareness of the daily challenges such families face and to allow us to establish what they would like future research to prioritise in regards to understanding epilepsy.
BEE-PP Parent Blog Post
One parent from the BEE-PP focus group completed a blog post where they described their experience of taking part in the study, and reflected on the outputs generated by the project.
They describe how their contribution to the study made them feel as if they were making a difference in the lives of families with children with epilepsy, and also that the research carried out in this study could enable increased support for such families.
The content from our online survey and focus group was reviewed by a patient representative and our charity partners, Epilepsy Research UK and Autistica. Following this, we collated the key findings from these investigations and created an infographic summarising the information we had gathered in an easy-to-understand graphical layout.