Patient and Public Involvement
Co-production of research priorities for infant epilepsy: the Brain development in Early Epilepsy Parent Priorities (BEE-PP) Project.
Welcome to the BEE-PP Project!
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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 begin the BEE study, we want 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.
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The BEE-PP Project aims:
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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
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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 will be 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.
Find out how to take part here. The BEE-PP project is funded by King's College London and The Wellcome Trust’s Institutional Strategic Support Fund.
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Families, and patient and charity representatives are asked to review and comment on outputs generated by the project,
including a parent-voiced video/animation of priorities for research on early behaviour and
development in early-onset epilepsy.
Focus group
Output reviewer
Blog post
In the final stage of the BEE-PP project, families can optionally write a short blog post reflecting on their experience taking part in the project.
Blog post
Online survey
Parents will be asked to complete an online survey in order to understand priorities for research in early behaviour and development in early epilepsy. The survey will also collect information on the impact of early epilepsy on child and family wellbeing. These themes will be explored further in the focus group.
Online survey
Focus group
Parents will be invited to take part in an optional 2-hour recorded online focus group. You will have the opportunity to discuss topics important to you and your family as well as those identified by the online survey
Output reviewer
Families, and patient and charity representatives are asked to review and comment on outputs generated by the project,
including a parent-voiced video/animation of priorities for research on early behaviour and
development in early-onset epilepsy.