Abstracts

Children with epilepsy are frequently prescribed diazepam rectal gel for the acute treatment of seizures. In addition to home use, parents have asked other caregivers in day care and school settings to administer diazepam rectal gel. Parents have reported resistance and refusal by schools or day care providers to administer diazepam rectal gel. This may have a significant impact on the child[apos]s well being and the child and family[apos]s quality of life. The purpose of this study was to identify the frequency with which parents of children with epilepsy experience barriers to the use of diazepam rectal gel in daycare or school settings, what those barriers are, and what the impact is on the child and family. This was a prospective study conducted in a comprehensive epilepsy clinic. During a six month period, parents of children birth to 18 years were screened to participate in the study. Parents of children previously prescribed diazepam rectal gel were asked to complete an 18 item questionnaire. Of 218 parents screened, 86 qualified for the study and 64 agreed to participate. Of the 64 parents who completed the questionnaire, 43 (68%) had asked their school or daycare to administer diazepam rectal gel. Overall, of those 43 parents, 35 (81%) reported that the school or day care agreed and 8 (19%) reported they refused to give diazepam rectal gel. Of these 43 parents, 16 (37%) asked MRDD schools of which 15 (94%) agreed and 1 (6%) refused; 21 (49%) asked public schools of which 17 (81%) agreed and 4 (19%) refused; and 6 (14%) asked private schools of which 3 (50%) agreed and 3 (50%) refused. There was a statistically significant difference in the responses between MRDD and private schools (p=.028). Reasons for refusal were: 5 (62%) not legally allowed to give diazepam rectal gel, 2 (25%) reasons were unknown, 2 (25%) worry that school staff would not know when to give the medication, 2 (25%) fear of embarrassing the child, and 1 (12.5%) fear of not being able to learn how to give the medication. Of the 8 parents whose school or day care refused to give diazepam rectal gel, 3 (42%) parents reported no effect on their family, but 3 (42%) parents worried their child would be hurt by a seizure, 1 (12.5%) parent kept her child at home, and 1 (12.5%) parent went to school with her child. Our study demonstrates that the majority of children prescribed diazepam rectal gel do not encounter barriers to its use in school and day care settings. However, children in private schools are significantly more likely to encounter barriers than are children in MRDD programs. The most frequently stated reason for refusal of the school or day care to give diazepam rectal gel was legal concerns. When schools refuse to give diazepam rectal gel, the quality of life of the child and family can be significantly impacted.