Patient and Public Involvement

Welcome to the BEE-PP Project!

The BEE-PP Project is linked to our wider research programme, the Brain development in Early Epilepsy (BEE) Study, which aims to identify predictors of emerging autistic traits in infants with epilepsy, and to understand shared mechanisms between epilepsy and autism.
Before we began the BEE study, we wanted to hear from parents and carers of young children with early-onset epilepsy to understand what is most important to investigate. In research this is known as Patient and Public Involvement (PPI). PPI is the active collaboration between patients, the public and researchers in the research process to conduct research ‘with’ and ‘by’ those affected by it, rather than using those individuals as subjects.

The BEE-PP Project aims:

1. To document the lived experiences of families of children with early-onset epilepsy
2. To identify parent/carer priorities for research about early development and behaviour

Parents and carers of children aged up to 15 years 11 months old that were diagnosed with epilepsy between 1-month and 36-months old were invited to participate. Their seizures must not be provoked by acute conditions, such as fevers, infections, trauma, electrolyte disturbances, transient metabolic, and/or endocrine disorders.

The BEE-PP project is funded by King's College London and The Wellcome Trust’s Institutional Strategic Support Fund.

BEE-PP Patient 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.

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 of 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.

BEE-PP Infographic

The content form 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 finding from these investigations and created an infographic summarising the information we had gathered in an easy-to-understand graphical layout.

Click here for key findings from our online survey.