The SEEN Study 2017

The purpose of the SEEN study was to document, on a population basis, the development and behaviour of young children with epilepsy. The study also focused on emotional wellbeing, sleep and fatigue in their parents.

Children with epilepsy have a high neurodevelopmental need and are at increased risk of learning and behavioural difficulties. Those who have epilepsy in early childhood are a particular risk group for such difficulties. Despite this, children with epilepsy rarely have their learning and behavioural needs identified as the focus is often on the need to manage seizures.

Parents of children with epilepsy are at high risk of mental health and sleep difficulties. This study highlights the need for further understanding of the needs of families in order to provide better support. There is limited population-based research, or research which compares parents of children with epilepsy with parents of children with other neurodevelopmental or neurological conditions.

For this study, a comparison group of children with neurodisability were included; these children did not have epilepsy but had other neurological or neurodevelopmental problems. This comparison allowed us to study whether having a child with epilepsy, specifically, has an impact on parental functioning.

Young Epilepsy – Key Findings from the SEEN Study

Children’s Development and Behaviour

  • 58% of children with epilepsy showed signs of developmental delay.
  • 81% were at risk of sleep difficulties.
  • 78% had significant emotional and behavioural challenges.
  • 29% met criteria for ADHD; 17% for Autism Spectrum Disorder (ASD).
  • 90% had delays in social development.
  • Children with epilepsy often had multiple co-occurring difficulties, requiring multidisciplinary support.

Parental Wellbeing

  • Mothers of children with epilepsy reported:
    • 55% at risk of depression (vs 27% in comparison group).
    • 47% at risk of anxiety (vs 31%).
    • 55% at risk of stress (vs 33%).
    • 64% experienced significant fatigue.
    • 62% had sleep problems.
  • Mothers consistently scored worse than fathers across all measures.

Access to Support

  • Few children had received psychological assessment despite clear needs.
  • Parents struggled to access professionals with epilepsy expertise.
  • Many were not informed about the developmental and behavioural impacts of epilepsy.
  • Parents reported long waits and a “battle” to access educational and therapeutic support.

Family Impact

  • Epilepsy affected siblings, family sleep, and finances.
  • Parents expressed a strong need for ongoing emotional and informational support.
  • Stigma was felt at a moderate level, similar to families of children with other neurodisabilities.