Abstracts

For people unfamiliar with epilepsy, a generalized tonic-clonic seizure is a frightening experience, while more subtle seizures may go unrecognized. We have designed a simple, one page, individualized emergency care plan (IECP) for children with seizures. The purpose of the IECP is to help parents and caregivers, (school, daycare, group home etc.) to understand what to expect and what to do in the event of a seizure. Our hypothesis is: Having a simple, written, child specific plan (IECP), should prevent delay in appropriate action, decrease emergency department visits and calls, and decrease anxiety in caring for a child with seizures.
The writers asked a parent of every child ages 2-16 years seen for an outpatient visit in a 14 day period to complete a brief survey regarding their child[rsquo]s IECP. They were asked to give a mail-in survey to a caregiver. The survey asked if their child had an IECP. If so, they were asked to rate on a 1-10 scale (1=not helpful, 10=extremely helpful) the helpfulness of the IECP, and rate its effect on their anxiety about caring for a child with seizures. If the IECP had been used, they were asked if they believed that it prevented delay in treatment and/or ED visits or calls.
43 surveys were distributed. 74% (32/43) of parents and 20% (9/43) of caregivers returned the survey. 75% (24/32) had an IECP. The range of helpfulness was rated 3-10 by parents and 5-10 by caregivers. 79% (19/24) of parents rated helpfulness in the 6-10 range, with 37% (9/24) rating it at 10. 89% (8/9) of caregivers rated the helpfulness of the IECP between 6-10, with 66% (6/9) of caregivers rating it as 10. In regards to the effect of anxiety about caring for a child with seizures, 95% (21/22) responders rated a decrease in anxiety in the 6-10 range, with 40% (9/22) rating it at 10. In the caregiver group 89% (8/9) stated anxiety was decreased in the 6-10 range, with 33% (3/9) rating it at 10. 41% (10/24) used the IECP in a 6 month period of time between 1-150 times. 66% (16/24) of parents felt the IECP prevented delay in treatment while 55% (5/9) of caregivers believed it prevented delay in treatment. 100% (24/24) parents and (9/9) caregivers believed it prevented emergency department visits or calls.
These findings support our hypothesis. Parents and caregivers both report the IECP as very helpful. This simple written plan not only improved the care of the child with seizures, but also decreased the anxiety related to seizures. There were no significant differences between parents and caregivers. In addition, there was a decrease in the economic burden by preventing ED visits. Additional benefits cited included parent sense of empowerment, consistency of care, greater freedom to travel, and a useful tool for training multiple caregivers.