Stakeholder Views of Epilepsy in the Biology Classroom: A Qualitative Exploratory Pilot Study

Abstract

While knowledge, attitudes, and practices towards epilepsy have been extensively investigated, studies that focus on recommendations for teaching units about epilepsy are scarce. To gain an understanding of stakeholders’ views on the content and structure of such units and their implications for educational practice, interviews with teachers (n = 4), first aid instructors (n = 4), representatives of epilepsy-related associations (n = 3), neurologists (n = 3), and people with epilepsy (n = 3) were conducted during a qualitative pilot study from May 2020 to August 2020. Transcripts were independently coded by two raters using MAXQDA, reaching a final coding agreement of 92.15%. While experiences with epilepsy vary, almost all interviewees agreed that teaching about epilepsy in school could improve the quality of life of people with epilepsy. A well-designed teaching unit would be welcomed by most stakeholders. Neuronal processes and first aid measures were considered to be the most important topics. Having students with epilepsy in the classroom, enough time for preparation and implementation and not creating anxieties in students were anticipated challenges while teaching. Generally, basic information in (pre-service)-teacher education, cooperation with external experts, and open communication with students with epilepsy and their parents were recommended. Basic knowledge about epilepsy and proper seizure management should also be included in pre-service teacher education. Based on these findings, teaching units on specific aspects of epilepsy should be integrated in classrooms as well as in pre-service teacher education. However, affected students with epilepsy need to be consulted beforehand.

1. Introduction

Epilepsy is a very common neurological disease with a prevalence of about 1 out of 100. Numerous studies have shown that many people with epilepsy (PwE) still face prejudices, a phenomenon called “stigma” [1,2,3,4,5,6,7]. Even though PwE are faced with somatic and psychological comorbidities up to eight times higher than their peers [8], quality of life (QoL) in adult PwE is strongly affected by perceived stigma, in addition to the occurrence of depressive symptoms and number of antiseizure medications [9]. Prejudices have also been reported among school children and their teachers from a high number of countries [10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33]. The extent and effect of stigma may vary between different geographical regions but they may also have more severe consequences than the seizures themselves, including psychological barriers to seeking medical advice or mental-health difficulties that may lead to discrimination [1,6,34,35,36].

Research on knowledge and attitudes towards epilepsy among teachers showed mixed results. On the one hand, systematic analyses point to specific issues needing to be addressed in pre- and in-service teacher education, e.g., that teachers are often reluctant to let children with epilepsy (CwE) participate in physical activities, or that they were not highly aware of how to act when confronted with seizures. On the other hand, correlations were found between having experience of teaching a CwE and positive attitudes [33].

When interviewing CwE, their parents, and school staff, Johnson et al. (2021) found that even though many interviewees were satisfied with communication and information exchange, a significant minority were not. Furthermore, several parents asked for support with respect to their child’s needs, including specifically addressing possible deficits in memorizing and processing information.

Even though stakeholders’ views on epilepsy in schools are well described [32,33] and several suggestions have been published as to how teachers could address epilepsy at school [31,37,38,39,40], there seems to be a prominent gap as to what stakeholders believe should be taught in such units. Consequently, our aim was to learn in more detail from experts of various epilepsy-related stakeholder groups about the issues that they felt should be addressed in school and whether they would have recommendations as to how to address those issues. In this pilot study, we conducted interviews with experts from the following groups with at least three experts per group: biology teachers, first aid instructors, PwE, representatives from associations and institutions working for and with PwE, and neurologists working for and with PwE. We explicitly chose a qualitative approach to allow for a more extensive search of relevant issues identified by these experts in contrast to a questionnaire study with a set of pre-defined answers [41]. The main research goal of this study was to obtain information on stakeholders’ experiences with epilepsy in their area of expertise as well as their views on educational interventions in schools.

2. Material & Methods

This qualitative exploratory study was a pilot study conducted in 2020 to gain insights into stakeholders’ experiences with epilepsy and their views on teaching about it in school.

The first author conducted all the interviews. His background as a pre-service teacher and experience as a first aid-instructor provided him with field-specific insights that enabled him to meaningfully engage with the participants. Due to the COVID-19 pandemic, one-on-one interviews had to be conducted via phone. Interviews were recorded with a smartphone. They took about 30 min.

Stakeholders (

Table 1. Demographic data from interviewees.

Name	Age 1	Sex	Profession/Reason for Their Expertise
T 1	40–50 Years	Female	Biology teacher (high school) with eight years job experience
T 2	50–60 Years	Male	Biology teacher (lower secondary school) with 31 years job experience
T 3	50–60 Years	Female	Biology teacher (lower secondary school) with 36 years job experience
T 4	50–60 Years	Female	Biology teacher (high school) with 25 years job experience
FAI 1 *	20–30 Years	Male	Pre-service teacher, first aid instructor
FAI 2 *	20–30 Years	Female	Pre-service teacher, first aid instructor
FAI 3	40–50 Years	Male	Employee of the General Secretariat of the Red Cross Austria
FAI 4	30–40 Years	Female	Employee of the General Secretariat of the Red Cross Austria
REA 1	50–60 Years	Female	Neurologist, chairperson of an epilepsy-related association
REA 2	50–60 Years	Female	Manager of an epilepsy-related institution
REA 3	50–60 Years	Male	Voluntary worker for an epilepsy-related institution
N 1 **	40–50 Years	Female	Neurologist, neuropediatrician and researcher
N 2	30–40 Years	Male	Neurologist and researcher
N 3	Over 60 Years	Female	Pediatrician with special education in neuropediatrics
IwE 1	20–30 Years	Female	Pre-service biology teacher
IwE 2	20–30 Years	Male	Student of neuroscience
IwE 3	30–40 Years	Female	Biology teacher

¹ For reasons of anonymity, age is given in age classes * pre-service teachers, who also worked as first aid instructors, but had very little teaching experience at school. ** spoke as representative for her association, not as a neurologist.

) consisted of people who may have experience with teaching about epilepsy (biology teachers, first aid-instructors), people who regularly consult with PwE (representatives of epilepsy-related associations, neurologists), and people affected by epilepsy. Interviewees with epilepsy (IwE) had different types of epilepsy, but all of them had developed symptoms by puberty at the latest. Inclusion criteria were being above 18 years old and belonging to one of the five stakeholder groups. Interviewees were either contacted via established teacher networks (general requests via email) or personal contacts (teachers, PwE, first aid instructors), after internet and literature screening (representatives from associations and institutions, and neurologists) or according to recommendations from the latter. They were not to be related or in any other personal relationship with the interviewer.

Interviewees were aware that the interviews would be used for a master thesis and could be analyzed for further research. Before consent was obtained, interviewees were informed about the study and its purpose and the fact that the interview would be recorded and analyzed. No participants dropped out during the study. Written informed consent has been obtained from all interviewees to publish this paper.

The semi-structured interview guide was validated via interviewing three experts (one teacher, one first aid instructor, one person with epilepsy, all not participating in the main study). This piloting showed that one common guide for all groups was not feasible. For example, whereas the ranking of epilepsy related themes (first aid measures, research, neuronal processes, ethics, living with the disease) was present in all five guidelines, only teachers were asked how many lessons they would devote to epilepsy, as this would be difficult to estimate for non-teachers. Thus, a guide for each of the five groups was developed with, however, most items present in all. Furthermore, phrasing was slightly simplified to facilitate comprehension of the questions. (One exemplary interview guide can be found online as Supplementary Material S1) Roughly, the topics addressed were:

• Work-related or private experience with epilepsy;
• Training related to epilepsy;
• Experience with teaching about epilepsy;
• Views on teaching epilepsy at school and its significance for people with epilepsy;
• Challenges, content, methods, and intensity of such teaching incl. integration of parents and external experts;
• Suggestions for pre-service teacher education concerning epilepsy.

Demographic data from participants are listed in Table 1.

Transcripts were analyzed according to Thematic Analysis [42] in a deductive-inductive way by MT and MS using MAXQDA (see Supplementary Material S2 for more details). Main categories were based on main issues addressed in the interview guidelines, while subcategories were defined both deductively (from the interview guidelines) and inductively (during coding) and were refined after coding. For this process, we followed a multi-step procedure with a pre-defined consensus level of minimally 90% for marked text passages as set by MAXQDA standards: (1) One interview from each stakeholder group was independently analyzed to check for existing subcategories and to identify new subcategories (=themes). After comparing their rating, dispensable text parts in marked passages were eliminated or further text parts were added for better understanding, and mistakes were corrected. (2) Definitions for several themes were made more explicit so that they could be identified more easily and demarcated from others. For example, the explanation for theme 3.1 (“Experiences made while teaching the topic of epilepsy to groups of students are described.”) was amended by ’’Consultative functions and individual meetings are excluded.” Additionally, theme 5.1 “Pupils with epilepsy” was changed to “Specific occasions”, and the original theme “Cooperation with external experts” was merged with theme 7.2 “Methodological approach”. (3) The team agreed that negative answers (e.g., “no experience teaching epilepsy at school”) were to be included for the given theme. (4) The new coding system was then used for independently analyzing all interviews, which resulted in a coding agreement of 77.83% for hitherto uncoded interviews and 83.31% when including those previously analyzed. (5) Again, dispensable text parts in marked passages were eliminated and mistakes were corrected. However, distinct differences in coding were left unchanged. Coding agreement then reached 92.15%.

3. Results

In this section, we present key results according to themes while indicating which stakeholder group stressed the importance of specific themes.

3.1. Experiences Concerning Epilepsy Outside Lessons Having Epilepsy as a Specific Topic

3.1.1. General experiences

As shown in

Table 2. Self-reported experiences with epilepsy outside the classroom.

Name	Personal Experiences with Epilepsy	Experiences with Epilepsy at School
T 1	Witnessed a seizure as camp counsellor	Mentioned it briefly during class, but otherwise none
T 2	Neighbor with epilepsy	Other than talking about it in a first aid course, none
T 3	None	None
T 4	Son with epilepsy	Reported having SwE in her classroom.
FAI 1	Witnessed seizures during work as paramedic	Witnessed seizures at school and at a first aid course
FAI 2	Talks about seizures in first aid courses	None
FAI 3	Witnessed seizures during work as paramedic	None
FAI 4	Friend with epilepsy	Tried to support SwE at school
REA 1	Education in pediatrics and neuropediatrics	Worked with students in school
REA 2	In-training consultant for PwE	Did a survey with teachers, a project with individual schools and teacher trainings.
REA 3	PwE himself	Provided materials for students and teachers
N 1	Specialized in neuropediatrics	None
N 2	Works with adult PwE	Was interviewed by pupils about epilepsy
N 3	Specialized in neuropediatrics	None
IwE 1	Diagnosed with epilepsy as young adult	Did not disclose her epilepsy at school
IwE 2	Diagnosed with epilepsy at puberty	Had a seizure during a school trip; Reported being bullied
IwE 3	Diagnosed with epilepsy at puberty	Disclosed her epilepsy at school.

, only one interviewee (T3) had no personal experience with epilepsy. Other groups included those who had either suffered from this disease themselves (IwE), had relatives with epilepsy (e.g., T4), or were professionally dealing with PwE (N, REA). Interest in the topic differed widely: while T3 was not very interested in the topic, other teachers stated that involvement would depend upon whether there were students with epilepsy (SwE) in their classes.

All first aid instructors had some knowledge about or experience with epilepsy.

The three REA were primarily helping PwE with, e.g., job-related questions or organizing online self-help groups, but were additionally working to increase public awareness. Their own education was comprised of pediatrics and neuropediatrics (REA1), training as a consultant for PwE (REA2), or knowledge due to being a PwE himself (REA3) plus participation in workshops. REA had been told a variety of experiences from PwE, e.g., that SwE were not allowed to take part in outdoor trips or in physical education, or that they were considered mentally limited.

All N had a focus on epilepsy in their jobs. N1 + 3 specialized in neuropediatrics. N1 offered the whole spectrum of diagnosis and advice to children with epilepsy but primarily worked with younger patients and their families from all over Austria who suffer from forms of epilepsy that are difficult to treat. Secondly, N1 accompanied her patients’ transition from adolescence to adulthood. N3 additionally conducted studies concerning medication. N2 mainly worked with adults. All conducted research and all primarily worked in outpatients’ departments.

Two IwE had been diagnosed with epilepsy during puberty. IwE1 had not regarded herself as a PwE until late in puberty, even though she had had a seizure when she was nine. She had feared to be abnormal because she was “hearing voices” (IwE1).

3.1.2. Experiences at School

12 interviewees had experiences concerning epilepsy at school, among them T4. T4 was the only teacher stating that she regularly had SwE in her classes. In such cases, “the parents come and tell me that their child has epilepsy and we agree upon which measures to take”. Other teachers believed that they had never had SwE in their classes.

REA visited schools, if requested by the family of SwE: “We start talking with the family, so that they know what it’s all about and that they develop confidence in their kid. Afterwards, we also speak with the teachers” (REA2). REA2 and many of their colleagues worked with school children or school doctors, but they missed obligatory programs.

None of the N had worked in schools so far, “although I think this would be important” (N1). N3 provided training for teachers. However, many of their patients had reported incidences at school, e.g., that some teachers had let SwE participate in trips and that SwE were very well integrated, while others had refused to give emergency medication or had not let SwE join trips. Many SwE had feared negative reactions from their classmates, e.g., that they were believed to be mentally ill or stupid. Additionally, many suffered from learning difficulties due to absences which often remained unrecognized at school. [As a side note, during this study, MT spoke with a related teacher about his work. Thereby, this teacher realized that one student, whom the whole school had classified as reluctant to learn or even querulous, might suffer from absence epilepsy. This child was then diagnosed with epilepsy at the local hospital. Neither the student nor her parents had been aware of this condition.]

IwE said that their classmates mostly behaved normally towards them, but IwE2 had been bullied by two fellow students at school.

3.2. Knowledge Obtained during Studies/Training

None of the teachers had learnt much about epilepsy in their studies. If at all, they had encountered the topic briefly in first aid courses. Three of the four FAI said that they had received no detailed education about this disease in their training apart from what to do in case of a generalized tonic-clonic seizure.

3.3. Experience Teaching about Epilepsy in Class

3.3.1. Experience as Teaching Person

Three teachers had referred to this disease in their biology classes, but without going much into detail: “Yes, I believe I mention this rather regularly when dealing with the nervous system. (...) But I don’t spend more time than five to ten minutes on it” (T1).

3.3.2. Experience as PwE

No IwE could remember whether or not epilepsy had been dealt with in their classes. REA1 reported that it had been addressed only when students who they counseled had done it themselves, e.g., by giving a talk about it.

Three interviewees (IwE1, IwE3, FAI1) said that one should bear in mind that dealing with the topic in class could be very stressful for SwE. IwE1 and IwE2 “wouldn’t have wanted it”, whereas IwE2 would have liked to talk about her epilepsy. IwE2 and REA1 expected positive results from talking about it in school because “students need allies” (REA1).

3.4. Teaching about Epilepsy in Class

3.4.1. Necessity of Teaching about Epilepsy in Class

14 of the 17 interviewees believed that epilepsy should be taught in school. Reasons given included that it was a common disease (T1, REA1, REA2, FAI4), to avoid/reduce misconceptions and negative attitudes (T2, REA2, N1, IwE1, IwE2), that one might witness a seizure and should be prepared for it (REA3, N3, IwE2, FAI1, FAI2, FAI4), that students should be aware of seizure triggers (T1), and to promote students’ and kindergarten children’s understanding of the disease (N1). However, N2 and IwE3 believed that there might not be enough time at school. T3 would not do it because she believed that it “doesn’t interest the students”.

3.4.2. Possible Effects of Teaching about Epilepsy in Class

15 interviewees agreed that teaching about epilepsy in the classroom could improve QoL of PwE through, e.g., reduction of prejudices and fear in students, educators, PwE and their parents, better integration of PwE, and preparation for seizures. Furthermore, N1 stated that a better understanding of their environment could foster higher compliance in PwE, e.g., concerning medication. Four interviewees stated an increased awareness of epilepsy as a possibly positive effect. IwE1 also mentioned the aspect of self-diagnosis: Had she been made aware of other forms of epilepsy at school, she may have been diagnosed with this disease earlier, which “could have changed my whole youth” (IwE1).

However, three participants said that a positive effect on QoL could only occur under specific conditions, e.g., that information is appropriate and does not scare people (N2, IwE2, IwE3), that it is done properly (IwE3), and that SwE are willing to discuss the topic in class (IwE3).

Two interviewees (T1, T3) did not think that teaching about epilepsy in class would improve QoL of PwE. This, however, was seen differently should SwE be present (T1).

3.5. Requirements/General Conditions for Teaching Epilepsy at School

Most interviewees mentioned having SwE as a specific occasion to talk about epilepsy in class, but IwE1 stated that this would highly depend on the individual SwE’s wishes. Additionally, five interviewees (T1, T3, T4, IwE1, IwE3) considered it to be important to talk to SwE prior to teaching about epilepsy. REA3 would speak about it even without the presence of SwE, because of its high prevalence. Students having witnessed a seizure, a student’s family member suffering from epilepsy, or a first aid course were other specific occasions named by the interviewees.

Several teachers stated that an important factor stimulating dealing with epilepsy at school would be its mentioning in curricula (T1, T3, T4). However, T2 would not discuss it even if it were in the curriculum because of the high number of topics to cover.

All teachers agreed upon grade 8 to teach about epilepsy, though classes with SwE might need earlier confrontation (T2, T3, T4, REA1, REA2). Some FAI (2–4) would already address primary school children, while others would wait until the age of 14 (N2, N3, IwE1). IwE2 and T4 recommended grade 10, when neurobiology is dealt with in greater detail.

Biology was generally seen as the most appropriate subject to talk about epilepsy. Nevertheless, three interviewees (T2, T4, REA1) stated that epilepsy could be dealt with in any subject. Interdisciplinary approaches and links with various subjects such as psychology, ethics, religion, physics, history, German, physical education, and elementary school science were mentioned.

Some teachers (T1, T3) would do lessons on epilepsy if students specifically asked for them. In contrast, T3 claimed that her students were not interested in “such [health related] topics”.

Availability of good material would encourage teachers (T1, T2, T4) to deal with this topic: “If I had a little help, basic information and some material, I would definitely do this” (T2).

3.6. Challenges Teaching Epilepsy (as Teacher/Instructor)

The main challenge mentioned in all groups were SwE in the classroom (11 interviewees). Lack of time to address epilepsy in the classroom was also referred to as a challenge (T1, IwE2, IwE3, FAI1). The complexity of epilepsy (IwE2) and, thus, sufficient preparation of teachers (T2, IwE2, FAI1), difficult questions from students (N1), avoidance of misconceptions (N1), finding adequate levels of difficulty for all pupils while including the parents (REA2), the creation of a respectful classroom atmosphere (N1), and teaching in a fact-based and unbiased manner (FAI4) were found to be additional challenges for teachers. Further perceived challenges named by teachers were disinterested students (T1) and the complex background concerning brain biology and information transmission in the nervous system (T1, T2). Other concerns were that seeing seizures (REA1, N1) or teachers describing them in detail (FAI1) could create anxiety (FAI3).

3.7. How to Teach Epilepsy in Class

3.7.1. (Possible) Content of Epilepsy-Related Units

Interviewees were asked to rank five themes (first aid measures, research, neuronal processes, ethics, living with the disease) according to the importance they would give them in their lessons on epilepsy. All groups placed knowledge about neuronal processes and first aid measures among the top two, while ethics and living with the disease was deemed less important and research was placed last. Some interviewees added further aspects, e.g., that living with epilepsy could be included in all other themes (FAI1), that all themes except research were equally important (N3), and that the primary focus should be on living with epilepsy, if the central issue in class was discrimination in general (REA2).

Generally, the main goal of teaching about epilepsy named by interviewees was to create an understanding of the disease and for PwE, to prevent prejudices and bad treatment, e.g., making fun of SwE for how they look or behave, but also to teach students how to react in case they witnessed a seizure. FAI3 explicitly recommended that teachers point out that PwE are not dangerous and to discuss psychological aspects. Further points were different types of seizures and emergencies, that epilepsy “does not change or reduce intellectual capability” (REA1), and health-promoting activities/behavior (FAI4). All N said that the main goal should be to teach basic knowledge and demonstrate first aid measures. N1 added that people should realize that emergency medication has to be delivered. IwE saw it as essential that people understand that there are a wide variety of different types of seizures, and that people should stop putting something between the teeth of a PwE during a seizure. Discussion of stigmata and prejudices were mentioned but often transferred to subjects such as ethics or psychology.

3.7.2. Methods

Two to eight lessons up to a whole week (as project) were seen as necessary for teaching about epilepsy at school. Teachers would prefer student-centered learning. One would invite an external expert. Tasks would comprise mostly searching for information on the internet, as well as videos and pictures, and work sheets and presentations in partner or group work. All teachers would work together with external experts: first aid instructors, PwE, and neurologists.

FAI mostly provide advice about what to do when witnessing a seizure. They recommended that teachers make use of a variety of methods, including case studies, searching for information, making students prepare and present posters, and practicing first aid measures. All would include external experts in school teaching.

REA use videos, animations, EEG diagrams, and case studies. They recommended that teachers invite PwE, have students deal with the topic in project work, and have them present their results to parents. All REA were positive about inviting external experts into schools. Additionally, REA1 suggested developing standardized material for schools together with experts.

N also suggested student-centered approaches, such as searching for information and presenting results. However, neurological processes and seizures should be explained through the teacher and/or videos due to their complex nature. It was also recommended to invite school doctors (if knowledgeable), PwE, or neurologists. Yet, PwE might only be experts for their specific type of epilepsy.

IwE would make use of experts including themselves, explain neurobiological facts in a presentation, possibly using a brain model, show videos, and make students perform group work. In any case, students should have enough time to ask and discuss their own questions.

3.8. Cooperation with Parents

3.8.1. General Cooperation with all Parents in Class

All interviewed stakeholders would not generally cooperate with parents. As one teacher explained, she would only invite a parent if she/he is an expert. No REA would integrate parents directly in such projects, with one exception: prejudices are spread from some parents about a SwE in class. Some participants would make students present their results to their parents. One reported that parents in one class had demanded to separate their children from a SwE. In such cases, information would be essential but very difficult to deliver. Here, e-learning and parents’ evenings at school were suggested as possible solutions (FAI2). All N were skeptical about inclusion of parents because of the large amount of effort involved. No IwE would integrate parents but IwE3 assumed that letting the students present their results in front of parents would spread information even further.

3.8.2. Cooperation with Parents of SwE

All teachers would inform parents of SwE but only some would cooperate with them. Some might invite parents of SwE to share their experience and expertise.

REA expressed the need for a closer collaboration between parents of SwE, physicians, and teachers, e.g., because medication may change. Teachers should also be provided with a checklist:

“Such a checklist could help teachers how to deal with SwE. This would also be a legal safeguard for teachers. In there, you could also find symptoms and what you have to do” (REA3).

3.9. Suggestions for Teachers from Other Stakeholder Groups

3.9.1. Pre-/In-Service Teacher Education

All FAI demanded better distribution of knowledge about epilepsy, including how to act in case of an emergency, e.g., “Many teachers do not know anything about emergency medication and how to give it” (FAI2). They suggested creating networks, e.g., with social workers, physicians, etc.

REA offered teacher training courses. In these courses, they had encountered fear and lack of interest when offering in-service training courses about epilepsy for teachers. For example, teachers would be afraid that they had to take responsibility after witnessing a seizure. Some teachers in these courses believed that they had never met a SwE and thus, regarded this topic as unimportant. Furthermore, REA observed that many teachers, especially from upper grades, had severe gaps in understanding this disease, e.g., what a seizure looks like, what kind of rights and duties teachers have, and how to provide first aid. REA suggested that teachers should receive education about basic medical and psychological knowledge concerning epilepsy and other chronic diseases, first aid measures including emergency medication and its legal background, and how to communicate with parents about chronic diseases and where to get help. Specific courses for in-service teacher education were also mentioned.

N would highly recommend that some basic knowledge about epilepsy should be delivered in pre-service teacher education to reduce fear.

Teachers themselves would highly appreciate being taught about this (and other) diseases in more detail during their studies.

All IwE recommended a greater focus on human biology.

3.9.2. Teachers in Class

All stakeholder groups suggest that teachers become better informed about epilepsy, that they discuss the manifold symptoms of this disease and how they relate to everyday life routines, and that teachers should be aware of the possibility that students being absent-minded may experience absences which may also cause learning difficulties. Finally, teachers should not exclude SwE from trips or physical education but instead, help them integrate into the class and discuss with their classes what to do during/after a seizure. However, all this should only happen with the permission of a SwE to avoid he/she feeling exposed. Furthermore, teachers should try to explain that epilepsy can occur in many different forms but should avoid creating anxiety towards this disease and PwE.

3.10. Key Points for Teaching Epilepsy at School

Table 3. Stakeholders’ key points for teaching about epilepsy at school.

Stake-Holder Group	Perceived Positive Outcomes	Perceived Challenges	Recommendations
T	Improving QoL of PwE Reducing anxieties Raising awareness Reducing stigma Better integration of PwE	SwE in class Lack of time Sufficient teacher preparation Disinterest of students Complexity of neurobiology	Cooperation with external experts Teacher trainings
FAI	Improving QoL of PwE Reducing anxieties Better understanding of epilepsy Better integration of PwE	SwE in class Lack of time Sufficient teacher preparation Creating anxiety Fact-based and unbiased teaching	Cooperation with external experts If SwE in class: teachers need to speak with them (and their parents) first Teacher trainings
REA	Improving QoL of PwE Reducing anxieties Raising awareness Better understanding of epilepsy Reducing stigma How to react/help in case of a seizure	SwE in class Creating anxiety Choosing an adequate level of difficulty Getting parents “on board”	Cooperation with external experts If SwE in class: teachers need to speak with them (and their parents) first Teacher trainings
N	Improving QoL of PwE Reducing anxieties Raising awareness Reducing stigma Foster compliance concerning medication How to react/help in case of a seizure	SwE in class Known PwE Creating anxiety Dealing with difficult questions Avoidance of misconceptions Creating a good classroom atmosphere	Cooperation with external experts If SwE in class: teachers need to speak with them (and their parents) first (Pre-service) Teacher trainings
IwE	Improving QoL of PwE Reducing stigma Better integration of PwE Recognizing own condition	SwE in class Lack of time Sufficient teacher preparation Complexity of epilepsy	Cooperation with external experts If SwE in class: teachers need to speak with them (and their parents) first Teacher trainings

shows a more detailed summary of the key points for teaching about epilepsy at school, summarized according to stakeholder-groups.

4. Discussion

The interviewed stakeholders’ experiences and views concerning teaching epilepsy at school, particularly in biology classes, differed widely in some but showed much congruence in other aspects.

Unsurprisingly, private as well as professional experiences greatly vary between different groups, but also within the same group. This is most striking when looking at teachers’ self-reported professional experiences with SwE. Answers ranged from the belief that they had never had a SwE in their classroom to awareness that they have such students in class regularly. Like previous studies [12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30], these findings show a lack of awareness and knowledge of epilepsy with some teachers and the need for teacher education programs. Such programs like lectures and discussions [43] or audio-visual material on basic aspects of epilepsy [44] could improve knowledge of and attitudes towards epilepsy, as well as seizure management among teachers [43,44,45]. This would be highly important since the likelihood of having a SwE in class is high and is apparently underrated by some educators. However, educational programs may not only increase awareness of epilepsy and strengthen teachers’ confidence in working with CwE, but as a result, may also improve their willingness to teach about epilepsy in their classroom.

Due to participants’ professions, experiences with teaching epilepsy at schools differ immensely. Several participants uttered that specific occasions were seen as a prerequisite for a comprehensive teaching unit on epilepsy. This strategy does not seem feasible as many teachers will not be aware of SwE’s disease and thus, a seizure may take teachers and classmates by surprise.

Most interviewed experts recommended that knowledge about epilepsy is delivered at school for two main reasons: understanding of the disease (and thus, reduction of stigma) and empowerment to act accordingly when witnessing a seizure. Educational programs at schools using varying educational strategies [10,11,37,39,40] all lead to a significant increase in knowledge and positive attitudes towards epilepsy among students. Those findings mirror results from quantitative studies in Austria [3] and Germany [4] whose authors noted that knowledge about the etiology of epilepsy, its treatment, and seizure management seem to prohibit or at least reduce formation of negative attitudes towards PwE. Perhaps surprisingly, even though IwE would want their surroundings to be better informed about epilepsy, they were the only group less certain about having epilepsy addressed at school. The main reason given was that SwE might feel uneasy when their own disease is discussed in class. Thus, a highly sensitive approach is required when epilepsy is talked about in the presence of SwE, which should only be done with the agreement of SwE.

Concerning content, first aid measures and neuronal processes were ranked at the top, while even neurologists placed research about this disease last. A lot of experts named additional themes, some of which were mentioned across groups. This shows, to some extent, a common understanding of desirable teaching content, while the ideas of how to teach it were rather diverse.

Having SwE in class while teaching about epilepsy was perceived as a challenge by all groups. As hinted by several participants, in such situations, it would be essential to speak with SwE first. Such students might then either be exempted from school by their parents during such day(s) or take this as an opportunity to inform their classmates about their condition in a well-prepared way, aided by the teacher and, possibly, friends in class. In this way, they could act as the experts that they are, and it could be beneficial for other students as contact with PwE and information directly given by them could lead to more positive attitudes [3,4]. Nevertheless, this includes the danger that the disease is only presented with the individual facets important to such child. Consequently, self-reports may need to be set in relation to a more general picture of the disease by the teacher.

Thus, it seems that PwE would generally profit from educational interventions if SwE in class were included in preparation and teachers acted sensitively and were well-informed. Interestingly, all interviewees would rather not have parents included in such units, except for parents being either experts or an audience to listen to student presentations. This point deserves some attention because students may (i) become future role models [10] and presenting in front of parents may (ii) contribute to spreading information about epilepsy.

Several studies indicate that education about epilepsy needs to and can be improved in pre-service, but also in in-service teacher education so that teachers become more confident on how to teach this topic and how to deal with students suffering from epilepsy in their classes [12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,43,44,45,46,47,48]. The interviews conducted here lend further support to this view: Pre- and in-service teachers unanimously stated that they had not learnt anything about epilepsy during their studies. Almost all other interviewed experts had encountered disinterested or badly informed teachers, either in in-service education courses or as SwE. Thus, it seems essential to have knowledge about this disease, its neurological background, consequences for participation in society (and stigma), and how to act when witnessing specific kinds of seizures integrated in pre-service teacher education. Apparently, many teachers are still unaware that there are more “silent” types of seizures, which are sometimes regarded as expressions of unwillingness to participate in class. In Austria, this could easily be integrated in courses about neurology and/or about human diseases, mostly taught in bachelor’s degrees in pre-service biology teacher education. Furthermore, it seems that the idea of involving experienced teachers in teacher education, raised by one expert, could be elaborated even further.

5. Conclusions

In conclusion, our study points towards several important aspects which need to be considered when implementing epilepsy education in schools and in pre-service teacher education curricula. Earlier studies have shown that well-designed teaching units may significantly and long-lastingly improve both knowledge and attitudes towards epilepsy in class. Our data provide further arguments in favor of such units and indicate which topics may need specific attention. However, such units require careful planning. If inclusion of external experts or the integration of SwE in such teaching is possible, it needs to be thoroughly discussed with these experts in advance for which specific topic(s) they are invited into the class to maximize such experts’ impact.

6. Limitations

This study is not representative of any of the interviewed stakeholder groups due to the limited sample size and should be regarded as a pilot to point towards possible topics which might need further scrutiny in a larger sample. Furthermore, school nurses and teachers from specific health-related classes could be included in countries where such courses are part of the school curriculum.