The Journal of School Nursing2021, Vol. 37(6) 441–448© The Author(s) 2019Article reuse guidelines:sagepub.com/journals-permissionsDOI: 10.1177/1059840519889395journals.sagepub.com/home/jsn
Psychogenic nonepileptic events (PNEE) are paroxysmal changes in behavior resembling epileptic seizures but with no electrographic correlate and are instead caused by psychological factors. In this qualitative study, semistructured interviews were conducted with 10 school nurses to identify how they perceive the experience of caring for a student with PNEE as well as supportive factors and barriers to optimal management of PNEE in schools. Several themes were identified: lack of diagnosis awareness by school staff leading to impressions that the student was “faking” the events, inadequate information provided by a health-care provider regarding the diagnosis in general and specifically about the individual student leading to a reliance on information from the student’s family, feelings of doubt and insecurity about the diagnosis and management of the events, and reliance on the school nurse to develop a response plan and to manage the events which can be very time-consuming.
psychogenic nonepileptic seizure, school nurse knowledge/perceptions/self-efficacy, mental health, pseudoseizure
School nurses are challenged with dealing with a wide array of physical and mental health problems in students. Seizures in particular can be quite frightening, and when a student has a seizure-like event that is determined to be functional rather than epileptic, school staff and the nurse may be very confused and anxious about how to help the student. Functional neurological symptom disorder (FND), previously known as conversion disorder, is a condition in which individuals exhibit physical characteristics of a neurological disease, but there is not an underlying medical explanation for the symptom presentation (American Psychiatric Association, 2013). Therefore, a comprehensive neurological evaluation is an important part of making a diagnosis to rule out other medical explanations. FND has various presentations including weakness, sensory deficits, or gait difficulties. Psychogenic nonepileptic event (PNEE) is one subtype of FND common in youth. In PNEE, individuals display paroxysmal changes in behavior that resemble an epileptic seizure. However, these events do not have an electrographic correlate, and the symptoms are thought to be caused by psychological factors.
The incidence and prevalence of PNEE in children has been difficult to establish, and reports are likely underestimated. One study in Iceland reported an incidence of 1.4 in 100,000 in ages 15–54 years with the highest incidence of 3.4 in 100,000 occurring in the 15- to 24-year age-group (Asadi-Pooya & Sperling, 2015). The semiology of PNEE is very similar to that of epileptic seizures, and therefore, the diagnosis is often delayed. The mean time from onset of events to diagnosis has been reported to be weeks up to 3.5 years in children (Patel, Scott, Dunn, & Garg, 2007), and as recently as 2017, it was reported to be 17.76 months in a group of 53 children diagnosed with PNEE at one center (Valente, Alessi, Vincentiis, Santos, & Rzezak, 2017). Of all children with convulsive status epilepticus, 20% have been found to have PNEE (Pakalnis, Paolicchi, & Gilles, 2000).
Treatment of PNEE and management of the events differ greatly from that of epileptic seizures. Epileptic seizures are caused by abnormal electrical activity in the brain and therefore require treatment with antiseizure medication. PNEE does not require treatment with antiseizure medication. The recommended treatment for PNEE is cognitive-behavioral therapy. One of the first steps in treating PNEE is helping the child to identify signs an event is beginning and to use relaxation strategies to prevent the progression of the episode (Reilly, Menlove, Fenton, & Das, 2013). To assist the child to learn these skills, it is important that those around them respond in a consistent manner each time they have an event regardless of where it occurs. Bystanders are asked not to provide additional stimuli during the event. The usual response to an epileptic seizure is actually deleterious to the treatment of a PNEE because it may accidently reinforce the PNEE symptoms (Doss & Plioplys, 2018), and it may increase the frequency and severity of events (Cole et al., 2015). Additional stimulation prevents a child from using relaxation strategies. Rescue medications and other emergency procedures are not necessary, and there is a risk of iatrogenic harm if a child with PNEE receives these interventions (Howell, Owen, & Chadwick, 1989; Kanner, 2003; Reuber, Baker, Gill, Smith, & Chadwick, 2004).
School-related difficulties and interpersonal family conflict are the most common precipitating factors for PNEE in childhood and adolescence (Reilly et al., 2013). In a study comparing youth with PNEE to their siblings, the authors identified more lifetime adversities, such as domestic or community violence, psychological abuse such as bullying, serious medical illnesses, anxiety, depression, and posttraumatic stress disorder in the youth with PNEE. In addition, youth with PNEE had lower intelligence quotients and more learning disorders than their siblings (Plioplys et al., 2014). Among this same cohort bullying and learning problems were more common than in their siblings and school work was a significant stressor (Doss et al., 2017). School difficulties have been identified as a risk factor or trigger for PNEE in 46% of children with PNEE (Patel et al., 2011). Verrotti et al. (2009) identified school phobia and fear of examinations as a common precipitating factor.
Children spend a significant portion of their time at school, and school stressors are commonly identified as a trigger for PNEE. Therefore, not surprisingly, PNEE often occur in the school environment. Seizure is the third most commonly reported school emergency (Olympia, Wan, & Avner, 2005), and some of these seizures are likely nonepileptic. School nurses have the primary responsibility for managing both epileptic seizures and nonepileptic events in school. Training for the management of epileptic seizures in school has been available from the Epilepsy Foundation for many years but not until recently has there been educational materials developed for school nurses about PNEE. Plioplys and Laux (2008) noted that one of the greatest difficulties in the management of PNEE in children is the response to the events in the school setting. Ravenna and Cleaver (2016) conducted a scoping review of the literature related to the school nurses’ experience managing mental health problems and found that promoting mental health and supporting students with mental health problems is a key role for school nurses. School nurses are viewed by students as more approachable than other school staff and are often approached by students about psychosocial concerns. Furthermore, schools are a significant point of entry into the mental health-care system and schools are often a site for the provision of mental health services (Kim et al., 2015). School nurses have the opportunity to not only manage the events in school but may be a resource for the student in the overall treatment of PNEE.
School nurses have been surveyed regarding management of epileptic seizures in school (O’Dell & O’Hara, 2007; Olympia et al., 2005). They also have been surveyed regarding their experience working with students with mental health problems (Jonsson, Maltestam, Tops, & Garmy, 2019), but no studies have specifically addressed school nurses’ perceptions about the management of PNEE in schools. While PNEE is not a common diagnosis encountered by school nurses we hypothesize that this is a particularly challenging diagnosis to manage in the school and warrants study. The goals of this study were to identify how school nurses perceive the experience of caring for a child with PNEE and to identify factors that are supportive and those that are barriers to the optimal management of PNEE in schools.
This was a qualitative study of school nurses regarding their experience in caring for students in their school with PNEE. Semistructured interviews using open-ended questions were conducted over the phone, at a time convenient for the school nurse. Interviews were held January through February 2016 and were recorded and transcribed verbatim. A content analysis was performed to identify themes in the nurses’ experience with PNEE and factors that are supportive and those that are barriers to the optimal management of PNEE in schools. The study protocol was submitted to Nationwide Children’s Hospital Institutional Review Board who determined that approval was not required.
School nurses were recruited via an e-mail blast sent by the Ohio Association of School Nurses to their members. Nurses were then contacted via phone or e-mail to determine eligibility and their interest in participation. Nurses were included in the study if they were currently practicing as a school nurse in Ohio and they had experience with at least one student in their school with the diagnosis of PNEE in the past 3 years. Ten nurses were eventually interviewed before data saturation was obtained.
Data were collected using a semistructured interview. Interviews were conducted over the phone by the same investigator, a pediatric nurse practitioner experienced in diagnosing and managing patients with PNEE. Interviews lasted 20–40 min. Demographic information regarding age, gender, education, nursing experience, and type of school setting was gathered at the beginning of the phone interview. The nurses were then asked several open-ended questions with clarification and asked follow-up questions as needed (Table 1). Interviews were conducted in January and February 2016. They were recorded and transcribed verbatim within a month following the interview. Data saturation was obtained after interviewing 10 nurses. No identifiable health information was shared by the school nurses in the interviews, and the names of the subjects and any identifiable information, such as school names, were omitted in the transcription of the interviews. Subjects were identified by numbers. All recordings were destroyed after data analysis was completed.
Data were analyzed using a qualitative descriptive approach with a conventional content analysis by the nurse practitioner who conducted the interviews and a pediatric psychologist experienced in treating children with PNEE. This research design is appropriate when there is limited information available about the topic being studied and when information from the perspective of the person experiencing a phenomenon is desired (Hsieh & Shannon, 2005; Vaismoradi, Turunen, & Bondas, 2013). Content analysis can be used for inductive or deductive research (Elo & Kyngas, 2008). Inductive research moves from specific to general. For this study, we obtained specific descriptions of experiences of school nurses. Both investigators read the transcripts several times and then coded the content. Categories were then generated from the codes and common themes were identified.
All of the nurses were female and ages ranged from 53 to 61 years of age. Seven of the 10 nurses had a master’s degree in nursing, 2 had a bachelor’s degree in nursing (BSN), and 1 had a registered nurse diploma (RN). Mean school nursing experience was 15 years, and total nursing experience was 30 years. Each nurse had experience with one to five students with PNEE. Seven nurses had a student currently in their school with the diagnosis and the other three nurses had had a student within the last year. Only one nurse had heard of the diagnosis of PNEE prior to their first experience with a student with PNEE. Information regarding the school setting for each nurse is shown in Table 2.
Four overall themes were identified in the nurses’ experience in caring for students with PNEE: lack of awareness, inadequate information, feelings of doubt and insecurity, and time-consuming. In addition, several factors were identified that were either supportive or a barrier to the optimal management of PNEE in the school setting. Direct quotes related to the themes are shown in Table 3.
Of the nurses we interviewed, several conveyed an overall lack of experience or awareness with the diagnosis. Many noted that they did not receive education regarding PNEE as part of their initial nursing or school nurse education. Moreover, PNEE has not been a topic readily available in subsequent continuing education, neither through their school district nor other typical outlets. Nine of the 10 school nurses interviewed had never heard of PNEE until a student at her school was diagnosed.
The lack of awareness about PNEE created a number of challenges. Just as there is a delay in diagnosis of PNEE in children presenting to neurology with seizures, the lack of awareness of this diagnosis delays the school nurse in developing a plan for managing these events in school. In addition to school nurses feeling unprepared to care for the students, many participants reported that this lack of awareness contributed to a common misconception by themselves or school staff that students were “faking” the episodes. One participant revealed that school personnel believed these youth were “crazy.”
Another challenge reported by school nurses was the lack of information regarding the condition even after diagnosis. Of the nurses we interviewed, most identified families as the typical source of information regarding the diagnosis; however, the quality and comprehensiveness of the information offered was described as limited.
In some instances, an actual diagnosis was not provided by the family or a health-care provider, which left school personnel confused and uncertain of how best to care for the students. Even when a formal diagnosis of PNEE was available, specific information regarding treatment or how to manage the events in school was not usually provided. It is unclear if the information provided by families was limited due to their own lack of understanding or perhaps potential discomfort disclosing a diagnosis with psychological implications. Regardless, many of the nurses expressed interest in having a more open dialogue with either the medical providers who made the diagnosis or the behavioral health specialists who may be working with the youth.
A final reality noted by the nurses highlighted the overall lack of information and resources available on the Internet. Several conducted independent searches to learn more about PNEE and to develop a reasonable intervention. Unfortunately, they were unable to find resources through commonly accessed nursing websites or medical institutions.
The lack of information the school nurses received led to feelings of doubt about the accuracy of the diagnosis and lack of confidence in how to respond to the events. They wanted to do what was right for the student and therefore followed recommendations they received and those they found in their research. However, they reported having nagging feelings of uncertainty that they were responding to the events correctly.
The feeling of doubt would then lead to fear, frustration, or helplessness. They did not believe they had a clear explanation of the diagnosis and its treatment, so they felt scared and helpless. They worried that they were not doing what the student really needed and didn’t have confidence in their interventions. They are accustomed to being in charge when a student has a medical problem, but it was difficult to feel in charge when they didn’t have full understanding of the diagnosis and how to help the student.
The discomfort they felt with managing the events dissipated over time for some nurses, especially if the events occurred frequently, over a long period of time or they saw multiple students with PNEE during their career. Others expressed ongoing feelings of insecurity.
Many nurses commented on how time-consuming it was to manage students with PNEE. Because little information was provided by the family or the treating provider, the nurses often spent a good deal of time conducting their own research on the diagnosis and its treatment and management. One nurse suspected a student’s events were PNEE after she had had another student with PNEE. She was very concerned the student had PNEE, but “it took a very long time to get diagnosed and it took some extended time to get a neurologist on board with the data I was presenting.” The nurses advocated for their students. Other school staff looked to the school nurse for leadership in dealing with the diagnosis. Since response plans often were not provided, they needed time to develop their own response plans despite their feelings of uncertainty and doubt. The school nurse was then responsible for educating all school staff on the diagnosis and the response plan.
The events are also time-consuming for teachers and other students, as they disrupt class and take away from instruction time for all students. When an event occurs in school, teachers, clerical and administrative staff often were not comfortable monitoring the student, so the nurse was responsible for staying with the student throughout the event. Nurses reported events lasting for up to or over an hour. While caring for the student with PNEE, there were other students with acute needs that required attention. This resulted in the nurses feeling pulled in two different directions. Additionally, others reported feelings of resentment when other students were having acute medical problems that were left untreated while they were tied up with students with PNEE, particularly when they questioned if the events were “faked.” Although nurses often felt frustrated with the time they spent managing students with PNEE, they also expressed pride in the leadership role they played as a school nurse in managing the events.
From analysis of the described experience of the school nurses and the answers to our direct question, we were able to identify several factors that were barriers and those that were helpful to the nurses in managing PNEE in the school setting. The lack of education, through nursing programs and continuing education opportunities, as well as limited information available from parents, providers, online, and in the literature are all significant barriers to managing the events. These factors delay the development of a plan for managing the events. They may also interfere with the progress of the student in learning to control the events, due to a possible lack of empathy and inappropriate response to the events. The limited information available also contributes to the amount of time nurses spent handling these events in school. They spent a great deal of time researching the diagnosis, seeking information from providers and parents, developing a management plan, and then responding the actual events when they occurred. School nurses already feel overloaded with responsibilities and do not feel they are given the time they need to manage PNEE without ignoring the needs of other students. Many of the nurses commented on the large number of students they are responsible for and the need for increased staffing in schools.
In contrast to the barriers, nurses described some positive experiences with students with PNEE. Factors that supported their management of PNEE included early, open, and clear communication about the diagnosis from the healthcare team working with the student. Respect and consideration for the school nurse’s observations facilitated their work with the student. The leadership the school nurses provided in educating school staff and modeling the appropriate response to events lead to better overall management of the events.
School nurses have an ever expanding range of responsibilities in caring for students in the school setting. They are being asked to manage students with increasingly complex health problems including those with devices such as ventilators, tube feedings, medication, and complex nursing needs (Bergren, 2013). In addition, school nurses are spending a large part of their day working with students with mental health problems (Jonsson et al., 2019). Nurses are being pulled in multiple directions on any given day, with limited resources. Across the United States, 35.3% of schools employ only a part-time nurse and 25.2% do not employ any nurses (Willgerodt, Brock, & Maughan, 2018). Some full-time nurses are responsible for more than one school, and they are required to float between campuses. Therefore, there are times when a nurse may not be on site when an issue arises. This qualitative study reflects the challenges school nurses are facing in managing the demands on their time. PNEE is one mental health problem that can be particularly challenging for schools.
This study demonstrates that nurses are frustrated with the lack of awareness and information available about PNEE. They feel insecure and doubt their own nursing care for students with PNEE and are frustrated by the time needed to work with these students. A recent analysis of school-based mental health interventions identified that school nurses have successfully implemented interventions in the school for other mental health concerns. School nurses armed with evidence-based clinical guidelines and improved staffing levels may be in an excellent position to partner with the PNEE treatment team to implement treatment within the school setting (Tanner, Miller, von Gaudecker, & Buelow, 2019).
School nurses need to be provided more information about this diagnosis in their overall nursing education and their continuing education opportunities, such as at school nursing conferences. The development of training tools that school nurses can use to educate staff is needed. Some progress has been made in this area by the Epilepsy Foundation. They are working on a supplemental training program for school nurses titled “Caring for Students Diagnosed with Psychogenic Nonepileptic Seizures,” which should be available soon on their website (https://www.epilepsy.com/living-epilepsy/our-training-and-education/seizure-training-school-personnel).
While greater awareness of the diagnosis will be helpful, perhaps more important is clear and open communication between school nurses and health-care providers about individual students with PNEE. Without a clear understanding of the diagnosis, the triggers for that student, and the overall treatment plan, school nurses will not be able to provide the best care for these students. They will not be able to develop a plan for management of the events in school and will not be able to direct others in their response to events. In our institution, we have developed materials to provide school staff with clear information about the diagnosis and how to respond to an event in school. This is given to all patients and families diagnosed with PNEE to give to the school. The nurse practitioner is also available to consult with school nurses as needed. This communication should be made available to all school nurses caring for a student with PNEE.
One of the most important factors which supports the optimal management of PNEE in schools is the leadership school nurses provide for school staff. The nurses interviewed repeatedly noted that school staff looked to them to manage these events. They expressed pride in their ability to develop a plan and guide school staff in responding to these events despite the lack of available information.
All nurses interviewed were females between 53 and 61 years of age with many years of experience in nursing in general and more specifically as school nurses. School nurses with less experience and of different ages might report different experiences. Seven of the 10 school nurses worked in public schools and most had only one school building for which they were responsible. Only 39.3% of schools in the United States employ full-time school nurses (Willgerodt, Brock, & Maughan, 2018). Schools represented in this study likely have better staffing models than many other schools in the United States. This limits generalization to nurses who are responsible for multiple school buildings or working in settings other than public schools. Only nurses who were members of the Ohio Association of School Nurses were interviewed. This may indicate a higher level of commitment to their profession than nonmembers and is a limitation of the study. In addition, school nurses from other states may have different experiences based on different school nurse practices and laws in other states.
PNEE in the school system is a challenging diagnosis for nurses to manage. Their perception of the experience working with these students has not been examined before. This study revealed that school nurses are often unaware of the diagnosis prior to having a student with PNEE and that they struggle with a lack of communication from health-care providers regarding the diagnosis and plan for students with PNEE, as well as with the lack of information available in the literature and online. They have feelings of doubt and insecurity and report that managing these events in school is very time-consuming. Increased information from healthcare providers, literature, and online will help them better care for these students. Despite these challenges, nurses are providing leadership in their school buildings to help students with PNEE be successful.
Debbie Terry and Kristen Trott contributed to conception, design, acquisition, analysis, and interpretation; drafted the manuscript; critically revised the manuscript; gave final approval; and agreed to be accountable for all aspects of work ensuring integrity and accuracy.
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is funded by a Research Grant from the Association of Child Neurology Nurses.
Debbie Terry, MS, CNP https://orcid.org/0000-0002-0175-2541
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Debbie Terry, MS, CNP, is at Division of Neurology, Nationwide Children’s Hospital, Columbus, OH.
Kristen Trott, PhD, is at Department of Psychology, Nationwide Children’s Hospital, Columbus, OH.
1 Division of Neurology, Nationwide Children’s Hospital, Columbus, OH, USA
2 Department of Psychology, Nationwide Children’s Hospital, Columbus, OH, USA
Corresponding Author:Debbie Terry, MS, CNP, Division of Neurology, Nationwide Children’s Hospital, 700 Children’s Drive, Columbus, OH, USA.Email: debbie.terry@nationwidechildrens.org