Abstract
Adolescents with functional (psychogenic nonepileptic) seizures experience school-related struggles. School nurses are positioned to address such struggles. However, school nurses report having little education or confidence in their role of managing or responding to this mental health condition. Little is known about adolescents’ perceptions of school nurses’ role in functional seizure care. This qualitative study used semi-structured interviews with 10 adolescents from across the United States with functional seizures to explore adolescents’ perceptions of school nurses’ roles in functional seizure care at school. Results revealed school nurses, when present, play a spectrum of roles according to adolescents’ perceptions, ranging from negative (harmful and uninvolved) to positive (being present, expressing care, and actively doing tasks for the student). These perceived roles shed light upon school nurses’ lack of functional seizure awareness and opportunities to incorporate mental health interventions for adolescents with functional seizures in the school setting.
Keywords
adolescent health, school nurse role, nonepileptic seizure, mental health
School nurses play a critical role in supporting adolescents’ management of functional seizures (Tanner, von Gaudecker, Buelow, & Miller, 2022) and addressing facilitators and barriers to adolescents’ self-management (Tanner et al., 2023). Functional seizures have also been known as psychogenic nonepileptic seizures or events, nonepileptic attack disorder, dissociative seizures, or pseudoseizures (this term is highly discouraged from use due to its connotation of faking seizures). Adolescents with functional seizures experience physical manifestations of a neurological disease that resemble epilepsy but are not associated with any abnormal brainwave activity. Functional seizures are therefore considered a symptom of functional neurological symptom disorder (formerly known as conversion disorder), a mental health diagnosis. Functional seizures are classified by the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) as a symptom of conversion disorder (functional neurologic symptom disorder). Adolescents with functional seizures experience school-related stress, bullying, accusations of faking seizures, and stigma at school (Tanner, von Gaudecker, Buelow, Oruche, et al., 2022). Previous reports from school nurses revealed school nurses can play a role in addressing these school concerns (Tanner, von Gaudecker,
Buelow, & Miller, 2022; Terry & Trott, 2021). However, their lack of knowledge about the condition (Terry & Trott, 2021) may result in school nurses contributing to, rather than addressing, these school concerns. For example, adolescents have described certain school nurse activities, including threatening to call EMS and providing inaccurate explanations of the diagnosis to other school personnel, as barriers to their condition management (Tanner et al., 2023).
Gaining an understanding of adolescents’ experiences with school nurses who prepare for and respond to adolescent functional seizures may inform future school nurse assessments and interventions. Currently, little evidence exists regarding adolescents’ experiences with or thoughts about school nurses’ role in managing and responding to functional seizures. Consequently, the following research question guided this study: What are adolescents’ perceptions of school nurses’ role in managing and responding to functional seizures at school?
During this Institutional Review Board-approved study, we recruited adolescents with functional seizures by sharing recruitment flyers to multiple audiences: (a) school nurses via state association listservs and state conference attendance, (b) health care providers listed on a functional seizure care provider website, and (c) Facebook support groups for people with functional seizures and their families. The flyer contained contact information for the principal investigator (PI; first author). For the parents/guardians and adolescents who contacted the PI, the PI reviewed adolescent criteria for eligibility. Inclusion criteria were: (a) self-reported diagnosis of functional seizures by a health care provider, (b) experience attending school after receiving the diagnosis, and (c) ability to articulate experiences in English. If deemed eligible, the PI obtained parental consent and adolescent assent.
After receiving appropriate consent and assent, the PI conducted a recorded one-on-one Zoom interview with each adolescent. The interview included broad data-generating questions eliciting any thoughts or ideas related to attending school with functional seizures. The overarching themes of their school experience and condition self-management have been reported elsewhere (Tanner et al., 2023; Tanner, von Gaudecker, Buelow, Oruche, et al., 2022). As a clarifying question, the PI asked if the adolescent had a school nurse. If yes, the adolescent was prompted to discuss what role the school nurse played in the adolescent’s school experience.
Following each interview, the research team used a transcription service to transcribe the interview. Then, the PI read each transcript multiple times to become familiar with the data and identify potential themes. The PI continued to recruit participants and conduct interviews until reaching data saturation (no new themes seemed to emerge; Marshall & Rossman, 2016).
In collaboration with the research team (co-authors), we conducted an inductive content analysis using an abstraction process (Bengtsson, 2016; Erlingsson & Brysiewicz, 2017). The adolescents’ responses specific to the school nurse role were broken down into meaning units. All meaning units regarding the school nurse role were entered into a Microsoft Excel worksheet. Using a new column for each step in the abstraction process, the meaning units were condensed, coded, categorized, and compiled into overarching themes.
A nationwide sample of 10 adolescents with functional seizures, 12 to 19 years of age, were interviewed to learn about their experiences attending public school. All adolescents in the study self-reported as female (100%), and 80% reported as White (20% Black). Four adolescents reported having access to a full-time school nurse while four reported access to a school nurse part-time (described as most days of the week, some days of the week, or partial days every day). One adolescent reported never having access to a school nurse, and another adolescent became too upset discussing her school experience to finish the interview or report on her access to a school nurse. Therefore, the data analysis included responses from the eight adolescents who reported full- or part-time access to a school nurse. Additional adolescent and school characteristics are presented in Table 1.
Twoobservationsrelatedtostudentshavingaccesstoaschool nurse reflect school nurses’ potential role in students’ academic and health outcomes. First, all adolescents who reported having part-time or full-time access to a school nurse also reported having received mental health care at some point. The single adolescent who reported never having access to a school nurse had also never received mental health care. Second, all adolescents with access to a school nurse reported having school accommodations for their condition (through Section 504 or an Individualized Education Program), while the single adolescent without a school nurse did not have any legally binding school accommodations.
Among the meaning units pertaining to adolescents’ school experience, 36 reflected the school nurse’s role with functional seizures. After completing the content analysis, five compiled themes emerged revealing a spectrum of school nurse involvement. From most negatively to most positively perceived school nurse roles, the following themes emerged: (a) harming, (b) uninvolved, (c) being, (d) caring, and (e) doing. Figure 1 visually depicts this spectrum with accompanying school nurse role examples.
Harming consisted of activities that were not helpful to adolescents and included school nurses accusing adolescents of faking their functional seizures. Two different adolescents reported school nurse activities within the theme of harming. One adolescent reported, “She just thinks I fake all of it and she just huffs and puffs.” Another adolescent described overhearing her school nurse, during a functional seizure, tell teachers that she was self-inducing the functional seizures: “She would make remarks when I was out having an episode to other teachers.”
Three adolescents provided details of their school nurses being uninvolved during their functional seizures. One adolescent described her school nurse as not actively involved in her functional seizure response because “she’s not really there all the time.” Another adolescent described the following scene: “Then there’s the nurse who just sits there and watches and just…I fell off a bed once. I woke up on the floor and she was just still typing on her computer.” The same adolescent also explained that other school personnel would call upon the school nurse for assistance and said, “They think she’s gonna help me, but she doesn’t helpmeatall.”
Two adolescents described their school nurses as being present for them. The meaning units within the theme of being differed from those within the theme of uninvolved based upon the meaning adolescents attributed to the meaning units. Adolescents attributed a negative connotation to uninvolved activities but a positive connotation to being activities. For example, one adolescent retold her school nurse “came by every time that I had a seizure.” Another stated, “She was there the first time I had a seizure,” and spoke comforting words, “It’s gonna be okay.”
Five adolescents provided examples of their school nurses exemplifying the theme of caring. One adolescent expressed her appreciation that her school nurse “became interested in the seizures” while another adolescent appreciated that the school nurse “became more educated.” Another adolescent described having a close relationship with her nurse, feeling supported by the school nurse simply listening, creating “a ton of inside jokes,” and being able to “tell when I’m disappointed in myself after having [a seizure] or upset.” A common sentiment among adolescents who perceived their school nurses as caring is reflected in the following statement: “We just talk. She helps me a lot.”
Lastly, five adolescents provided examples of school nurses doing, or taking action beyond one-to-one communication for their benefit. Within the theme of doing, the school nurse’s role included several condition management activities—training non-nurse personnel about the cause of functional seizures and how to appropriately respond to them, coordinating a plan that included not calling EMS for functional seizures, advocating for adolescents and their families to obtain a Section 504 plan with appropriate school accommodations, teaching adolescents coping strategies to use when sensing an impending functional seizure, and developing a communication plan with families that did not disrupt their work day (such as a weekly summary report). In response to functional seizures (immediately before, during, or after), school nurses safely transported adolescents to the health office when necessary, allowed students to rest briefly, provided approved snacks, and determined the appropriate disposition of the adolescent (such as remain in the health office for monitoring or return to class).
It is important to consider the role school nurses play simply by being accessible to adolescents with functional seizures and the school personnel who interact with the adolescents. The one adolescent in this study who did not have access to a school nurse also did not have access to mental health care nor a legally binding set of school accommodations for the condition. While we cannot be certain that a school nurse’s presence would have changed access to these key aspects of functional seizure management, assessing and intervening upon both aspects are within the scope and standards of school nursing practice (National Association of School Nurses [NASN], 2022).
Harming and uninvolved. Adolescents’ descriptions of school nurse responses perceived as harming or simply uninvolved include a partially correct response to functional seizures. It is appropriate not to touch or say much to the adolescent during a functional seizure (Caplan et al., 2017). However, experts agree that a brief statement of reassurance upon functional seizure onset can be helpful, as detailed in a functional seizure action plan developed by the Functional Neurological Disorder Society Pediatric Special Interest Group (Carey & Watson, 2023). Because school nurses responding with little to no visible response may be perceived as harmful or uninvolved to adolescents with functional seizures, providing an age-appropriate explanation to the adolescent during the action planning phase may change this perception. The adolescents’ peers may also perceive the school nurse’s lack of response as negative or harmful; therefore, peers or classmates may also benefit from an explanation of appropriate functional seizure response plan (if the adolescent and family approve this in the action plan).
Being. Like the slight difference in perception between the harmful and uninvolved roles, there is little difference in visible school nurse activities between the more negatively viewed role of uninvolved and the more positively viewed role of simply being, or present. In previous studies, adolescents with functional seizures have struggled to be believed and understood by their healthcare providers (McWilliams et al., 2017; Nielsen et al., 2018; Tanner, von Gaudecker, Buelow, Oruche, et al., 2022). Feeling believed by the school nurse may make a difference in adolescents’ perceptions of school nurses’ roles and activities.
Caring. School nurses commonly report feeling inadequately prepared or not confident in addressing functional seizures (Terry & Trott, 2021) as well as other mental health symptoms (Kaskoun & McCabe, 2022; Taylor-Beirne & Taylor-Beirne, 2022). Adolescents in our study benefited from basic positive communication with the school nurse. The school nurse caring role involved what adolescents referred to as “just talk” which reflects the power of therapeutic communication, motivational interviewing, and tenets of cognitive behavioral therapy noted in other effective school nurse mental health interventions (Bohnenkamp et al., 2015; Ginsburg et al., 2021). These interventions may go undocumented by school nurses because they happen so quickly and easily between adolescents and school nurses in a trusting relationship.
Doing. The role of doing included school nurse interventions representing principles of care coordination and leadership as described in the Framework for 21st Century School Nursing PracticeTM (National Association of School Nurses, 2016). Care coordination activities included developing action plans and teaching school personnel their role in implementing the plan. Leadership activities involved advocating for appropriate accommodations and ensuring policies and procedures for functional seizures did not include inappropriately calling EMS. These doing interventions are applicable to a variety of physical and mental health concerns.
It is also beneficial to consider the adolescents’ functional seizure experiences in light of school nurses’ reported experiences. Similar school nurse role themes and concerns were reported in Terry and Trott’s (2021) qualitative study of school nurses’ experiences caring for students with functional seizures. In their interviews, school nurses reported having a lack of awareness of functional seizures, with nine out of 10 school nurses having never heard of functional seizures until they cared for a student with the condition in their school. When receiving information about the diagnosis, most relied on the students’ families for information about functional seizures and how to best respond to them at school. This lack of information resulted in school nurses lacking confidence in how to best manage and respond to functional seizures. However, school nurses who communicated with their students’ health care teams, educated school personnel, and modeled an appropriate response to functional seizures felt respected and revered as leaders for their role. In our study, adolescents expressed appreciation for school nurses doing tasks that led to school nurses feeling respected and revered as leaders.
This is the first study to include adolescents’ voices in understanding the role of school nurses in managing and responding to functional seizures at school. However, several limitations exist. The sample size for this analysis of school nurse roles was small (n = 8 adolescents with school nurses who completed the interview and limited information from participant 7) and lacked diversity. Future studies should include purposive sampling to ensure greater diversity in race, ethnicity, gender, and type of school (public and private) providing more generalizable results. Additionally, the recruitment methods used may have resulted in recruiting more disgruntled adolescents. However, the research team continued to recruit until maximum variation in school experiences was elicited (Etikan et al., 2016). Lastly, it is important to remember that the results from this study reflect adolescents’ perceptions of school nurses’ role in managing and responding to functional seizures. The school nurses described in the responses may have been implementing many other interventions that the students were not aware of. Even so, there is value in understanding what adolescents perceived their school nurses to be doing on their behalf and taking steps to overcome actions perceived as harmful or inadequately involved.
School nurses play a critical role in the school management of functional seizures and responding to functional seizures. School nurses are uniquely positioned to assess student-specific needs and intervene from a whole-child perspective (NASN, 2022). This includes developing school nurse interventions with an understanding of the healthcare system (such as challenges to adolescents receiving appropriate mental health care), the education system (such as opportunities for schoolbased interdisciplinary collaboration when developing a Section 504 plan or Individualized Education Program plan), family dynamics (such as parents’ beliefs about the condition and accessing mental health care), and any social determinants of health that may influence adolescents’ care (such as insurance status and transportation availability).
School nurses also play a key role in shaping school connectedness (McCabe et al., 2022). The trusting relationships that adolescents can form with the school nurse provide an opportunity for school nursing interventions. Interventions involving therapeutic communication may improve health outcomes for adolescents with functional seizures (Tanner, von Gaudecker, Buelow, & Miller, 2022), as they have been reported to increase follow through on mental health referrals and decrease anxiety symptoms (Bohnenkamp et al., 2019; Ginsburg et al., 2021; Muggeo et al., 2017; Tanner et al., 2020). Future research should explore the important construct of school connectedness as it relates to school nursing interventions and student outcomes.
Our study describes adolescents’ perspectives on school nurses’ role in managing and responding to functional seizures, not the perspectives of the many other players in the school management of functional seizures. It would be helpful to also explore the perspectives of adolescents’ families, interdisciplinary school care team members, and health care team members. While school nurses’ perspectives were explored by Terry and Trott (2021), an updated study within the context of our current adolescent findings would also support a holistic understanding of functional seizure care in schools.
For adolescents with access to a school nurse, they perceive a spectrum of roles the school nurse plays in managing and responding to functional seizures at school. The spectrum ranges from negative (harmful or uninvolved) to positive (being present, caring, and doing/taking action). This study highlights how school nurses make a difference in the school experience of adolescents with functional seizures, from negatively impacting the views and actions of others to positively providing compassionate, competent care that aligns with the Framework for 21st Century School Nursing PracticeTM. As evidenced by the harmful or imperceptible involvement of some school nurses, school nurses would benefit from education about the cause of functional seizures, the positive role school nurses can play in managing and responding to functional seizures at school, and the resources available to guide care.
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 work was supported by the Robert Wood Johnson Foundation, National Institute of Nursing Research (grant number Future of Nursing Scholar Fellow, T32 NR018407).
Andrea Tanner https://orcid.org/0000-0002-2965-7749
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Andrea Tanner, PhD, RN, NCSN, is a nationally certified school nurse and an assistant professor at Indiana University School of Nursing in Bloomington, IN, USA.
Jane von Gaudecker, PhD, RN, AGCNS, is an assistant professor at Indiana University School of Nursing in Indianapolis, IN, USA.
Janice M. Buelow, PhD, RN, FAAN, is a professor emerita at Indiana University School of Nursing in Indianapolis, IN, USA.
Wendy R. Miller, PhD, RN, CNS, CCRN, FAAN, is the Executive Associate Dean for Research and professor at Indiana University School of Nursing in Indianapolis, IN, USA.
1 Indiana University School of Nursing, Bloomington, USA
2 Indiana University School of Nursing, Indianapolis, USA
Corresponding Author: Andrea Tanner, Indiana University School of Nursing, Bloomington, USA. Email: andrtann@iu.edu
