Abstracts

Rationale: There are about half a million school aged children living with epilepsy in the United States. One-third are refractory to treatment and at risk for prolonged or cluster seizures. In schools, a trained person must administer the medication generally within five minutes. Because of school policies, funding issues and perceptions about the dangers of using rescue medications outside of the clinical setting however, trained personnel are not always available, leading to delayed management. Poor seizure management leads to unnecessary hospitalizations, personal and economic burden, increased risk for status epilepticus (SE), emotional problems, worsening morbidity, and mortality. Seventy percent of seizures are not effectively managed in the pre-hospital setting, and are treated only after 911 is called; thereby delaying potentially brain saving treatment from five minutes to an hour or longer, making epilepsy the most expensive chronic pediatric condition to treat. This project describes a mixed methods quality improvement endeavor to investigate barriers and opportunities to effective seizure management in Georgia public schools. Methods: Investigators compared data from 350 school nurse surveys and family experience narratives with Board of Nursing and American Association of Pediatrics position statements to clarify obstacles to successful seizure management and articulating suggestions to improve health, academic and emotional outcomes in school children with epilepsy. The goal of this work was to identify safer and more effective strategies to improve seizure management in schools to: reduce absences, improve attendance, participation and performance, and reduce the risk for morbidity and mortality.Parent Stories Three Individual parent stories about their child’s experience with seizure management in school were used as a representative sample of the pediatric epilepsy community. Data was captured from parent-narrated recordings to glean key information about: type and timing of the intervention, characteristics of the environment and location where the seizure occurred, and level of privacy that the student received during the intervention. If the student received rescue medications, who administered them? What was the outcome of the intervention or lack of intervention? Finally, investigators looked at the extent that the seizure action plan was followed. The investigator quoted and paraphrased parents’ words and tone to gauge the strength of the relationship between parent(s), the student and school staff. All data were organized and then categorized into themes such as: trust or distrust, anger or approval, level of collaboration and communication that occurred between family and school staff, and the impact of the experience on the child. Parent stories provided the foundation for this work because capturing narrative data is of primary importance in qualitative projects. Personal stories are vital for making comparisons or identifying relationships across the concepts being studied (Polit & Beck, 2017). School Nurse Surveys A 21-question, multiple choice needs assessment survey was developed specifically for school nurses to gather information in the following areas: school nurse knowledge of epilepsy and seizure management, perceptions about safety and efficacy of rescue medications, awareness and knowledge of school health or board of nursing policies regarding delegation or use of specific rescue medications, and the level of responsibility and liability that school nurses perceive they have if they train or delegate other staff to manage seizures. Three hundred-fifty school nurses voluntarily completed the survey at the (2017) Georgia Association of School Nurses (GASN) Conference in Savannah. Of the completed surveys, 345 were useable for data collection. Sample questions include: Do you know your school’s policies on rescue medications for seizures? Do you know where the rescue medications are stored? How long would it take you to retrieve rescue medications? Are you comfortable training other staff on seizure management? How many schools do you oversee?Position Statements School health position statements were collected from the following organizations: (1) National Association of School Nurses (NASN). The NASN leads in the transformation of school health. (2) American Nurses’ Association (ANA). The goal and mission of the ANA is to create a health care environment where nurses can thrive and which can improve health for all. (3) American Association of Pediatrics (AAP) is a 67,000-member organization that plays a powerful role in shaping pediatric health care policy. (4) The Georgia Board of Nursing/National Council of State Boards of Nursing (NCSBN) regulates policy for nurses, but schools are autonomous and may have health delivery policies that conflict with Boards of Nursing. This poses significant implications for school nurses. Results: The summarized findings from this and other studies indicate that the greatest challenges for sustainable changes in seizure management in schools are: bureaucratic barriers (school policy, board of nursing position statements), budgetary constraints, and misperceptions about the safety of using rescue medications outside of the clinical setting. School Nurse Surveys While 94% of school nurses knew their school’s policy on seizure management, only a handful (12%) knew their rescue medication policies, and most (55%) had never administered rescue medications themselves. Although each school may have up to 20% of students with a chronic condition such as epilepsy, 20% of nurses oversee 6-10 schools. Parents of children believe their children are at higher risk than students with other chronic conditions because of restrictive rescue medication policies that limit who can provide epilepsy medications but not necessarily for asthma attacks, severe allergies, and other medical emergencies. School nurses assert that every student with epilepsy needs a detailed, relevant seizure action plan that is updated yearly. However, staff and other resources are not always available to adhere to the plan. Themes from parent stories Parents concur that seizure action plans and rescue medication preferences are not always followed in schools resulting in conflict and communication breakdown. Anger is evident but not directed at individuals because it is a system problem caused by misunderstandings and/or misperceptions. Anger is worsened because policies and interventions are not negotiated between parents and school. This leads to an impasse and negatively impacts the student. Frustration results from conflict over policies and perceptions of uncaring staff. Frustration was detected through tearful speaking and the use of emphatic statements. Parents indicated that they have poor communication with the school and increased conflict. Distrust develops when parents feel they are not included as partners in their child’s care at school. Feelings of helpless and disconnection lead to communication breakdown and counterproductive thoughts. Poor communication results from disagreement or misunderstandings about policies which they perceive cannot be changed. This analysis also provides insight into the impact on the child: poor attendance, fear, distrust, isolation, somatization, worsening physical and psychological health, poor attendance and academic failure.Position Statements and Accommodation Plans The AAP, NASN, and ANA published a joint statement that when a school nurse is not available, they recommend having unlicensed assistive personnel (UAP’s) with the required knowledge, skills, and composure deliver specific school health services under, and as delegated by a licensed RN (AAP, 2009). The AAP (2009) further asserted that “training and supervision of UAP’s are necessary for providing safe, accurate, and timely administration of medication in school”. However, school boards are autonomous and not required to adhere to nursing or pediatric authoritative bodies. The Georgia Board of Nursing currently prohibits nurses from delegating administration of some rescue medications with the general statement, “Administration of rescue medication is a complex nursing responsibility which requires knowledge of anatomy, physiology, pathophysiology, and pharmacology” (Georgia Board of Nursing, 2015). Michigan has an alternative perspective that was recommended in 2016. “The Michigan School Nurse Advisory Council strongly recommends intranasal midazolam is administered in the presence of a school nurse. When a school nurse is not present, school districts may consider developing an accommodation plan that specifies the school’s responsibilities to ensure student safety” (www.michigan.gov/edu, 2016). An accommodation plan should include the following components: collaborative communication with the prescribing health care provider and the local emergency medical services, and yearly (or as needed), documented skill-based training from a registered nurse. The health care provider’s contact information should be available to the staff. Schools should seek legal counsel to ensure they are meeting the needs of their students with epilepsy, and protecting both licensed and unlicensed staff to manage seizure emergencies. Conclusions: Authors identified impediments to: timeliness, safety, ethical treatment, and effective seizure management resulting from prohibitive or vague policies. To prevent or minimize seizure related complications in schools, school health policies and boards of nursing should delineate safe and effective strategies for managing students with chronic conditions by viewing epilepsy through the same lens as diabetic, asthmatic or anaphylactic emergencies. School nurses are experienced and qualified to manage seizures but they lack time and resources to train and delegate other staff. Their concerns are synonymous with parents’, and align with the literature, posing significant implications for advocacy and quality improvement activities. Providers and patients prefer non-rectal medications but because schools often prohibit their use, the patient may receive a treatment that aligns with school policy, but may not be preferred. This creates moral and safety conflicts and blurs lines of liability and protection for school nurses who are responsible for their students’ health and well-being. This work was limited by having only three family narratives, and using a convenience sample of families who attend the epilepsy support group at a local hospital. That was counterbalanced by the school nurse summaries which encompassed a very large sample (345) across the state of Georgia, and each nurse is responsible for up to ten schools. Perceptions of 345 school nurses represent their experiences in 2,500 individual schools. The goal of this quality improvement project was to stimulate immediate changes to improve seizure management in schools. There is sufficient evidence from this work to justify the following: implementing practice change based on literature, position statements, and consensus of parents, providers, and school nurses; there is potential for immediate and progressive improvements in seizure management for school children; standardized, safer protocols are needed for students with epilepsy; advocacy will increase awareness and education about the implications of prolonged seizures on morbidity and mortality, and increased awareness may stimulate resource reallocation to improve seizure management in schools. Health care providers are positioned to advocate for their school aged patients, and health policy experts must be fully engaged to guide the process.  Funding: No funding