The impact of early onset epilepsy on the parents and siblings of affected children.

Epilepsy is the most common serious neurological disorder in childhood. Most affected children have onset of their epilepsy by age 5 years (early onset epilepsy), a critical period for neurodevelopment. They experience not only seizures, but they may also suffer cognitive/behavioural impairments. Thus, there may be a substantial burden placed on families but the effects of early onset epilepsy on families remain uncertain. These data are essential for development of improved treatment strategies. Investigating early onset epilepsy is particularly important as it affords the possibility for early detection and intervention.

The aim of this doctoral work is to carry out a qualitative study with parents and siblings of children under 5 affected by epilepsy in order to identify the impact of early onset epilepsy on families. This research will parallel an already funded project of ours aimed at identifying the prevalence, characteristics and risk factors for cognitive/behavioural impairments in Edinburgh resident children with early onset epilepsy. Both projects will foster interdisciplinary collaboration between Univeristy of Edinburgh researchers from the newly formed Muir Maxwell Epilepsy Centre, the Centre for Population Health Sciences.

All Edinburgh resident children aged 4 years with early onset epilepsy (circa 50 from Mid 2010 Population estimates) will be identified through a multi-tiered notification system and their families invited to participate. An appropriate qualitative methodology will need to be developed and/or selected for this doctoral work (e.g. focus groups, (serial) in-depth interviews, ethnography). This will be developed by the successful candidate with supervision. Parents will also be asked to complete the General Health Questionnaire 28 (GHQ28).