There are approximately 120,000 people with epilepsy in the Netherlands. When a child or parent has epilepsy, the impact on the immediate family can be severe. Assistant professor and child and youth care researcher Roos Rodenburg studies how living with epilepsy affects parents and children. She does so in collaboration with other scientists in the Centre of Excellence for Epilepsy and Sleep Medicine (SEIN), which was recently named the top centre of expertise for epilepsy and sleep medicine in the Netherlands.
Rodenburg is involved with a number of research projects aimed at the effects of living with epilepsy. She conducts research into:
The common element in these projects is the collaboration between clinical and behavioural scientists, along with the practical application of scientific knowledge in the form of training and advice for parents and care workers.
Many children with epilepsy suffer from anxiety and symptoms of post-traumatic stress, which may be expressed as behavioural problems. In such cases, parents may experience child-rearing as a heavy burden due to both the epilepsy itself and these resulting behavioural problems. Together with SEIN, Rodenburg conducted research into these behavioural problems in family situations and applied the findings to develop a stress-reduction protocol. This step-by-step training course teaches parents of children with epilepsy how to remain calm in difficult and/or unexpected parenting situations.
Women with epilepsy who become pregnant are often advised to continue taking their anti-epilepsy medication during their pregnancy. This may increase the likelihood of congenital defects in the child. Together with University of Amsterdam (UvA) PhD candidate Yfke Huber-Mollema, Rodenburg is exploring whether children of mothers with epilepsy are at a greater risk of developmental delays, learning disabilities or behavioural problems, and whether this is connected to factors within the family, such as parenting tactics.
More effective information provision for women with epilepsy who wish to become pregnant
The results of the study, which are expected to be published in the coming year, are also intended to promote more effective information provision for women with epilepsy who wish to become pregnant, as well as better treatment and support for children who have been exposed to anti-epilepsy medication during gestation.
Excessive crying and sleeping problems can be especially difficult and concerning when the young children or parents involved suffer from epilepsy. The support that baby clinics and GPs provide to parents of babies who cry excessively usually involves the well-known method of 'Calm, Routine and Predictability', but not every parent will achieve success using this method.
The well-known method of 'Calm, Routine and Predictability' doesn't work for everyone
Together with SEIN researcher Eline Möller, Rodenburg is conducting experimental research into the effectiveness of responsive methods for helping babies cry less and sleep better: the 'smart crib' that rocks a swaddled baby and emits soothing white noise; and the Happiest Baby Method, which simulates conditions inside the womb using swaddling, positioning the baby on its side, rocking, shushing sounds and suckling.
SEIN is a tertiary health care institution with 13 outpatient and two inpatient clinics, three sleep-wake centres, three residential care facilities, a daytime activity centre and a school for special education. Young people and adults with epilepsy and/or a physical or cognitive disability are welcome to make use of SEIN's daytime activities and can receive support in connection with learning disabilities and behavioural problems resulting from epilepsy.
SEIN is number one in the Netherlands
SEIN conducts scientific research into the causes and treatment of epilepsy and sleep problems, in cooperation with partners including the UvA. Global rankings place SEIN first in the Netherlands, making it the country's leading centre of knowledge and expertise in the field of epilepsy.