Brief Communication
`
`Acceptance of the Use of Diazepam Rectal
`Gel in School and Day Care Settings
`
`Debbie Terry, MS, CNP, Juliann Paolicchi, MD, and Mary Karn, MSN, CNP
`
`Journal of Child Neurology
`Volume 22 Number 9
`September 2007 1135-1138
`© 2007 Sage Publications
`10.1177/0883073807306254
`http://jcn.sagepub.com
`hosted at
`http://online.sagepub.com
`
`This study was conducted to identify how often parents
`of children with epilepsy encounter barriers to the use of
`diazepam rectal gel in day care or school settings and how
`these barriers affect the child and family. Sixty-four parents
`completed an 18-item questionnaire documenting their expe-
`rience with asking their child’s school to administer diazepam
`rectal gel. No data regarding its actual use in the school was
`obtained. Forty-three parents (68%) had asked their school to
`administer diazepam rectal gel; 35 (81%) reported school
`
`agreement, and 8 (19%) reported refusal. In 5 of these
`refusals, the cited reason was legal concerns, and in 5
`cases the refusal had some adverse effect on their family’s
`life. Most children prescribed diazepam rectal gel do not
`encounter resistance to its use in school and day care set-
`tings. Barriers to its use are usually due to legal concerns and
`significantly affect the family’s quality of life.
`
`Keywords:
`
`rectal diazepam; schools; barriers
`
`Diazepam is often used for the acute treatment
`
`of seizures. Diazepam rectal gel was developed to
`allow parents and caregivers to treat acute repetitive
`seizures at home and outside of the hospital. Although not
`approved by the United States Food and Drug Administration
`for the treatment of prolonged seizures, diazepam rectal gel is
`often prescribed off-label for this use.1-3 Diazepam rectal
`gel is safe and effective for use outside of the hospital and
`provides a feeling of control for parents of children with
`epilepsy.1-6
`When rectal diazepam is not used, the standard treat-
`ment for the child with acute repetitive seizures or a pro-
`longed seizure is the administration of an intravenous
`antiepileptic medication such as diazepam or lorazepam by
`trained medical personnel and a trip to the emergency
`department. Unfortunately, in our experience, this some-
`times results in delayed treatment, physiologic changes due
`to prolonged or repetitive seizures, and emotional and finan-
`cial burdens associated with the seizure and its treatment.
`Parents and caregivers have been administering diazepam
`rectal gel safely in the home since 1997,7 and some parents
`ask other caregivers in schools or day care settings to admin-
`ister rectal diazepam if needed. The availability of diazepam
`
`From the Comprehensive Epilepsy Center, Department of Neurology,
`Columbus Children’s Hospital (DT, JP, MK); and the College of Nursing
`(DT) and the Division of Pediatric Neurology (JP), The Ohio State University,
`Columbus, Ohio.
`Address correspondence to: Debbie Terry, Certified Nurse Practitioner,
`Department of Neurology, E5, Columbus Children’s Hospital, 700
`Children’s Dr, Columbus, OH, 43205; e-mail: terryd@chi.osu.edu.
`Terry D, Paolicchi J, Karn M. Acceptance of the use of diazepam rectal gel
`in school and day care settings. J Child Neurol. 2007;22:1135-1138.
`
`rectal gel in school and day care settings may make it easier
`for children to participate in school and social activities
`while parents work or engage in other activities important to
`the family’s quality of life. Some parents, however, report
`that schools and day care providers refuse to administer
`diazepam rectal gel, which may have a significant adverse
`effect on the child’s well-being and the child’s and family’s
`quality of life. The purpose of this study was to identify the
`frequency with which parents experience barriers to the use
`of diazepam rectal gel in day care and school settings, what
`the barriers are, and the effect of such problems on the child
`and family.
`
`Methods
`
`A prospective study using a convenience sample was con-
`ducted in the Columbus Children’s Comprehensive Epilepsy
`Clinic from December 2003 through May 2004. Parents of
`the 218 children seen in the clinic for epilepsy were screened
`to participate in the study at a child’s routine clinic visit.
`Parents eligible to participate in the study were those who
`had a child aged younger than 18 years with epilepsy who
`had been prescribed diazepam rectal gel for treatment of pro-
`longed or acute repetitive seizures before the current clinic
`visit. Only 1 parent per patient participated in the study.
`Each participant completed an 18-item questionnaire
`that included forced-choice and open-ended questions
`about their experience with asking their child’s school to
`administer diazepam rectal gel. We developed the question-
`naire from our clinical experience, and content validity
`was established by pretesting with 10 parents and content
`
`1135
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`1136 Journal of Child Neurology / Vol. 22, No. 9, September 2007
`
`Table 1. Parents’ Reasons for Not Asking School to Give
`Diazepam Rectal Gel (N = 21)
`
`Table 2. Effect of Previous Use of Diazepam Rectal Gel Use
`on Parents’ Decision to Ask the School
`
`Reason
`
`Child does not go to school
`Child’s seizures occur infrequently or
`primarily during sleep
`Parents did not want school to give
`Parents were afraid someone might
`hurt the child
`Parent did not know they could ask
`the school to give
`Parent did not think school staff could
`learn how or when to give
`
`Frequency of
`Diazepam Gel
`Use in the Past Year
`
`Parents Asking
`School (n = 43),
`No. (%)
`
`Parents Not
`Asking School
`(n = 21), No. (%)
`
`Never
`1-3 times
`>3 times
`
`a. χ2 = 8.3
`
`19 (44)
`6 (14)
`18 (41)
`
`9 (42)
`9 (42)
`3 (14)
`
`P Value
`
`NS
`NS
`0.02a
`
`No. (%)
`
`7 (35)
`7 (35)
`
`5 (25)
`2 (10)
`
`2 (10)
`
`2 (10)
`
`review by other pediatric neurologists and nurses. The study
`was approved by Columbus Children’s Hospital Institutional
`Review Board.
`
`Results
`
`Of the 218 children screened, 86 of their caregivers met
`inclusion criteria and 64 agreed to participate. The average
`age of the child was 7.9 years (22 months-17 years): 1 (2%)
`was younger than 2 years old, 12 (27%) were 2 to 5 years
`old, 25 (58%) were 6 to 11 years old, and 5 (12%) were older
`than 12 years. Of the 64 children, 31 were boys (48%)
`and 33 were girls (51%). Twenty (31%) were in a special
`education classroom, indicating some degree of cognitive,
`behavioral, or physical impairment. The 64 caregivers who
`completed the questionnaire consisted of 56 mothers, 5
`fathers, 1 foster mother, and 2 legal guardians.
`During the last year, 36 of the 64 children (56%) had
`received diazepam rectal gel at home, school, or else-
`where in the community: 15 (28%) received diazepam
`rectal gel 1 to 3 times, and 18 (41%) received it more than
`3 times. In addition, 12 children (18.8%) had been trans-
`ported from school to an emergency department at least
`once in the last year for a seizure.
`Of the 64 parents surveyed, 43 (68%) asked the school to
`administer diazepam rectal gel, whereas 21 parents (32%)
`had never asked the school to do so. Reasons cited by par-
`ents for not asking the school to administer diazepam rectal
`gel are summarized in Table 1. Parents of children who had
`received diazepam rectal gel more than 3 times in the last
`year were significantly more likely to ask the school than
`were parents of children who had received the medication 3
`times or less in the past year (Table 2). Age, gender, and past
`history of emergency transport from school for seizures did
`not significantly affect whether parents asked the school to
`administer diazepam rectal gel.
`Of the 43 parents, 35 (81%) reported the school agreed
`to administer diazepam rectal gel, and 8 (19%) reported
`school refusal. Reasons for refusal of schools to give
`
`Table 3. Reasons Cited by Schools for Refusal to
`Give Diazepam Rectal Gel (N = 8)
`
`Reason
`
`Not legally allowed
`Concerned about privacy for child
`Concerned they would not know when to give
`Parents did not know the reason
`Concerned they could not learn how to give
`Concerned the child would stop breathing
`Concerned about sexual abuse allegations
`Concerned they would hurt the child
`
`No. (%)
`
`5 (62)
`2 (25)
`2 (25)
`2 (25)
`1 (12.5)
`0
`0
`0
`
`diazepam rectal gel are summarized in Table 3. By χ2 square
`analysis, age, gender, past use of diazepam rectal gel, and
`past history of emergency transport from school to hospital
`for seizures did not significantly differ between those who
`reported school agreement and refusal.
`Of the 8 parents who reported school refusal, 5 indicated
`that the refusal had some adverse effect on their child and
`family: all 5 parents worried their child would be hurt by a
`seizure, 3 kept their child at home some days or full time and
`were not able to work or go to school themselves, and 1 went
`to school with their child. Only 3 of the 8 parents who had
`reported school refusal had not affected their child or family.
`Information about these types of concerns was not collected
`from the parents who reported school agreement. Parents
`could have these same concerns regardless of whether the
`school agreed to administer diazepam rectal gel.
`The type of school the child attended had a significant
`effect on the school’s willingness to administer diazepam
`rectal gel (Table 4). Schools administered by the Depart-
`ment of Mental Retardation and Developmental Disabilities
`were significantly more likely to agree to administer
`diazepam rectal gel than were private schools (Fisher exact
`test, P = .015). Although not reaching statistical signifi-
`cance, public schools tended to be more willing to adminis-
`ter diazepam rectal gel than were private schools; however,
`both were less likely to agree than were the Department
`of Mental Retardation and Developmental Disabilities
`schools.
`
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`Table 4. School Setting and Agreement to
`Give Diazepam Rectal Gel
`
`Table 6. Concerns Reported Regarding Administration of
`Diazepam Rectal Gel
`
`Use of Diazepam Rectal Gel / Terry et al 1137
`
`Parents
`Who Asked
`(N = 43), No.
`
`School Agreed
`(Overall = 81%),
`No. (%)
`
`School Refused
`(Overall = 19%),
`No. (%)
`
`Concern
`
`Reported by
`Parent (N = 40),a
`No. (%)
`
`Reported
`by School
`(N = 35), No. (%)
`
`No concerns
`Will not know when or
`how to give
`Not legally allowed
`Child will stop breathing
`Child will be embarrassed
`Child will be hurt
`Child will be sexually abused
`
`17 (42.5)
`21 (52.5)
`
`5 (12.5)
`5 (12.5)
`4 (10)
`2 (5)
`1 (2.5)
`
`a. Three parents did not answer this question.
`
`24 (68.6)
`5 (14.2)
`
`3 (8.6)
`2 (5.7)
`2 (5.7)
`0
`0
`
`School Setting
`
`MRDD schools
`Public schools
`Private schools
`
`15
`22
`6
`
`15 (100)
`17 (77)
`3
`
`0
`5 (13)a
`3b,c
`
`NOTE: MRDD = Department of Mental Retardation and Developmental
`Disabilities.
`a. MRDD school versus public school: Fisher exact test P = .067.
`b. MRDD school versus private school: Fisher exact test P = .015.
`c. Public school versus private school: Fisher exact test P = .31.
`
`Table 5. Special Education Services for Child
`and School’s Agreement
`
`Special Education Service
`
`Agreed, No. (%)
`
`Refused, No. (%)
`
`Discussion
`
`1:1 aide or nurse
`Occupation/physical/
`speech therapy
`Special education classroom
`Regular classroom
`Aide in classroom
`Individualized education plan
`
`9 (90)
`23 (85)
`
`17 (85)
`5 (83)
`13 (81)
`27 (79)
`
`1 (10)
`4 (15)
`
`3 (15)
`1 (17)
`3 (19)
`7 (21)
`
`The type of special education services the children
`received is listed in Table 5. Although not significant (P =
`.42), schools tended to agree to give diazepam rectal gel
`if the student had a 1:1 aide or nurse: 9 of 10 schools
`(90%) agreed to give diazepam rectal gel when the child
`had a 1:1 aid or nurse compared with only 26 of 33
`schools (79%) agreeing if the child did not have such
`assistance.
`Schools that agreed to administer diazepam rectal gel
`sometimes still expressed concerns about its administra-
`tion. Parental concerns and school concerns as reported
`by parents are summarized in Table 6. Overall, parents
`cited more concerns than did the schools, especially
`regarding when and how administration should occur.
`In schools agreeing to diazepam rectal gel administration,
`the school nurse was most frequently the person designated
`to administer the medication (70.6%). However, other per-
`sonnel, such as the teacher, school aide, 1:1 nurse for child,
`principal, aide on a bus, and even a bus driver, were trained
`and designated in the emergency plan to administer rectal
`diazepam. Information about how school personnel were
`trained to administer the medication was not obtained; some
`parents commented that they or the nurse provided training.
`Parents were generally happy with the plan developed by the
`school: 24 parents (70.6%) were very happy, 6 (17.6%) were
`somewhat happy, 3 (8.8%) were somewhat unhappy, and 1
`(2.9%) was very unhappy.
`
`Most parents in this study did not encounter barriers to the
`administration of diazepam rectal gel in their child’s school
`or day care setting. Barriers were most often related to legal
`concerns, and refusal usually resulted in some adverse effect
`on the child and family. The greatest parental concern was
`that the child would be hurt by a seizure. Parents were gen-
`erally happy with the school’s plan to administer rectal
`diazepam; plans usually relied on the nurse but also included
`a number of other individuals in the school. Only the type of
`school setting (private schools versus Department of Mental
`Retardation and Developmental Disabilities schools) had a
`significant effect on school agreement.
`
`Legal Concerns
`
`Although legal concerns were identified as a concern by
`both parents and schools, there is no legal reason in most
`of the United States why school personnel cannot adminis-
`ter a rectal medication such as diazepam rectal gel in an
`emergency situation.8 For example, Ohio Department of
`Education rules mandate that each school system’s board of
`education adopts a policy authorizing its employees to
`administer prescription drugs to students enrolled in their
`schools.9 Unfortunately, many schools do not have a full-
`time licensed nurse and must rely on unlicensed personnel
`to administer medication. In addition, the Ohio Nurse
`Practice Act allows for the delegation of medication admin-
`istration, including rectal medication, to unlicensed school
`personnel especially in an emergency situation.10
`The Individuals with Disabilities Education Act and
`Section 504 of the Rehabilitation Act require schools that
`receive federal funding to provide special education and
`related services to children with disabilities such as epilepsy.
`Schools must make reasonable accommodations to allow for
`the safe inclusion of students with disabilities in school pro-
`grams.8,11 Having trained personnel available to administer
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`1138 Journal of Child Neurology / Vol. 22, No. 9, September 2007
`
`diazepam rectal gel is a reasonable accommodation for stu-
`dents with epilepsy. The Epilepsy Foundation has developed
`a position statement on the use of diazepam rectal gel in
`schools, child care centers, and camps. They urge providers
`of child care and educational services to work with the child,
`family, and health care providers to learn how to safely
`administer diazepam rectal gel, citing this as a reasonable
`accommodation required by federal law.12
`
`Quality-of-Life Issues
`
`Several studies have documented an improvement in quality-
`of-life measures secondary to diazepam rectal gel. Parents
`report reduced disruption of daily activities and family life,
`reduced time lost from work and school, and feelings of
`empowerment by the improved control and management of
`the patient’s epilepsy.3-5 In our study, parents reported that
`when the school agreed, they usually were happy with the
`emergency plan. When schools refused, however, parents
`often reported some adverse effect on the child and family’s
`quality of life. Parents worried about their child’s well-being
`and, in some instances, had to make significant accommoda-
`tions in their child’s education or their family’s life by keep-
`ing their child at home or going to school with the child.
`However, some parents may have these same concerns or
`make the same accommodations even when the school
`agrees to administer diazepam rectal gel.
`
`Type of School Setting
`
`All Department of Mental Retardation and Developmental
`Disabilities schools and most public schools in our study
`agreed to administer diazepam rectal gel. The Department of
`Mental Retardation and Developmental Disabilities regula-
`tions specifically provide for training of staff on the adminis-
`tration of diazepam rectal gel.13 Although public schools are
`mandated to develop a policy for the administration of med-
`ications, policies vary with the local school district’s interpre-
`tation of state and federal laws. We suspect that private
`schools, which often receive no federal funding and are
`under no legal requirement to provide special services for
`children with disabilities, are less likely to make accommo-
`dations to administer diazepam rectal gel. It is also possible
`that parents in other regions encounter more difficulties
`than those in Ohio.
`
`Conclusion
`
`In general, the administration of diazepam rectal gel to treat
`acute, symptomatic seizures is available to our patients
`in their school and day care settings. The Department of
`Mental Retardation and Developmental Disabilities schools
`were the most accommodating environment. A school that
`refuses to administer diazepam rectal gel most often cites
`legal concerns as the reason for refusal, and the child and
`family’s quality of life may be impacted.
`
`Acknowledgment
`
`This work was presented at the American Epilepsy Society
`Annual Meeting, Washington, District of Columbia, Decem-
`ber 4, 2005; at the Child Neurology Society Meeting,
`Los Angeles, California, September 31, 2005; at the Interna-
`tional Epilepsy Congress, Paris, France, August 31, 2005;
`and at the Pediatric Academic Society, Washington, District
`of Columbia, May 17, 2005.
`
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