If you are a person who developed epilepsy in childhood – or are a sibling of a person who developed epilepsy in childhood - a new study being conducted by the PENNI research team wants to hear from you (PENNI - Project on educational and neuropsychological outcomes of children with neurological disorders in Ireland).
The study is seeking to investigate the experiences of those living with epilepsy throughout childhood and into adulthood. The study will assess the educational, occupational, social and functional outcomes of those who developed childhood epilepsy.
Furthermore, the study is also keen to hear from those who were siblings of people who developed childhood epilepsy and assess the same outcomes as epilepsy is a condition which affects the entire family unit - particularly when it is uncontrolled.
It is hoped that the information gathered through this research will be used to develop a resource that will support children with epilepsy and their parents to plan for their future as well as helping further inform clinicians and educators on the experiences of those living with the condition – both in terms of a direct diagnosis and those whose sibling live with the condition.
The study may also lead to the development of further research aimed at enhancing the school experience for children with epilepsy in the future.
The research is being conducted by the PENNI research team. This includes PhD candidate Clara Sherlock, Dr. Michelle Downes and Dr. Christine Linehan from the UCD School of Psychology; and Dr Cathy Madigan of Children's Health Ireland at Temple Street. This project is funded by Temple Street Foundation.
If you would like to take part and support this research, please take the survey on the UCD School of Psychology website. You can also opt-in to taking part in an interview at a future stage of this study within the survey if you would like to get further involved.
If you have any questions about this research, please contact Clara by emailing clara.sherlock@ucdconnect.ie.
Research Request Summary
Who? If you are aged 18-35, had your first seizure during childhood and continue to have seizures, the PENNI research team wants to hear from you. The team also wants to hear from those who are at least 18 years old, were raised in the same household as a person with epilepsy and are aged within 10 years (older or younger) of your sibling with epilepsy.
Why? The information provided will be used to make a resource that will support children with epilepsy and their parents to plan for their future.
How? To take part and to read further details on this study, please visit the survey page on the UCD School of Psychology website.