Keywords
Curriculum, Epilepsy, Effectiveness, Education, Intervention
Epilepsy is a highly stigmatized neurological condition in rural South Africa, where it is often misunderstood and associated with cultural myths, such as witchcraft. This study aims to implement and evaluate a culturally sensitive epilepsy education intervention in primary schools within Limpopo Province. Using a Community-Based Participatory Research (CBPR) design, the intervention will integrate epilepsy education into the Life Skills curriculum for Grades 5 to 7. The project involves conducting a needs assessment, co-developing the curriculum with stakeholders, training educators, and implementing the program in selected rural schools. Quantitative pre- and post-intervention surveys will measure changes in knowledge and attitudes, while qualitative methods will capture the experiences and perceptions of participants. The anticipated outcomes include improved knowledge of epilepsy, reduced stigma, increased educator confidence, and the creation of a more inclusive school environment. Additionally, the study aims to promote sustainability through a train-the-trainer model and advocate for the integration of epilepsy education into policy. This intervention seeks to bridge the gap between biomedical knowledge and traditional beliefs, ultimately contributing to long-term improvements in health literacy and social inclusion for individuals with epilepsy in under-resourced school settings.
Curriculum, Epilepsy, Effectiveness, Education, Intervention
This updated version of the manuscript includes several revisions aimed at improving methodological clarity, transparency, and reproducibility following reviewer feedback. The study design has been refined to more clearly describe the quasi-experimental cluster approach and the allocation of participating schools. The description of outcome measures has been expanded, including clearer operational definitions for key constructs such as epilepsy knowledge, attitudes toward epilepsy, stigma, and inclusive school environments.
Additional methodological detail has been provided regarding the evaluation instruments, including the structure of learner and teacher questionnaires, scoring procedures, and plans for reliability testing. The timing of outcome assessments has also been clarified, specifying baseline, immediate post-intervention, and follow-up assessments to evaluate both short-term learning gains and retention of intervention effects.
The curriculum intervention has been described in greater detail, including lesson structure, content progression across Grades 5–7, educator training procedures, and fidelity monitoring mechanisms. A new section has been added outlining the cultural adaptation process used to ensure the intervention addresses locally relevant beliefs about epilepsy while maintaining biomedical accuracy.
The data analysis plan has also been added on the revised version. Improvements have been made to the reporting of ethical considerations, confidentiality procedures, and data-sharing plans to enhance transparency and align the protocol with open science and ethical research standards.
See the authors' detailed response to the review by Michael S. Petrides
See the authors' detailed response to the review by yasemin sahin yildiz
Epilepsy is a significant neurological condition that affects millions worldwide, with a particularly high prevalence in rural areas of South Africa, including in Limpopo province. Despite its medical classification, epilepsy continues to be misunderstood, often being associated with supernatural beliefs such as witchcraft and evil spirits.1–3 Such misconceptions perpetuate stigma and discrimination, leading to social isolation, limited healthcare access, and adverse psychological impacts on affected individuals.4–8
Prior research highlights the need for structured epilepsy education interventions within primary schools as an effective means of reducing stigma and misinformation. The previous study also developed guidelines aimed at incorporating epilepsy in life skills education.9,10 Therefore, the current project seeks to leverage existing guidelines developed for epilepsy education in Mpumalanga and Limpopo primary schools to implement and evaluate a comprehensive epilepsy education program. The intervention will target Primary schools to ensure a broad impact on young learners, educators, and the community.
Despite available clinical knowledge on epilepsy management, there remains a critical gap in translating this knowledge into school-based health literacy programs, especially in under-resourced rural schools. Studies have shown that although awareness campaigns exist, they are often ad hoc and lack systematic follow-up or integration into the educational curriculum.2,3,9 As a result, epilepsy related misconceptions persist, particularly among school-aged children and their caregivers, many of whom rely on traditional or informal sources of information.9,11,12 This gap underscores the urgent need for structured, evidence-based, and culturally sensitive interventions in schools to improve understanding and foster acceptance.3,13
Moreover, existing research often focuses on epilepsy awareness in urban or clinical settings, leaving rural school contexts under-represented.2,14,15 In South Africa, especially in Limpopo Province, little is known about how primary school learners perceive epilepsy or how teachers respond during seizure episodes. Several reports suggest that teachers feel ill-prepared or fearful when faced with such scenarios, potentially leading to further stigmatization and the exclusion of affected learners from classroom activities.14,16–19 These contradictions between medically recommended epilepsy management and the lived realities of learners require urgent contextual and educational attention.
Another critical gap lies in the lack of long-term evaluation of school-based epilepsy interventions. While some initiatives report short-term improvements in knowledge, few studies assess whether these gains translate into lasting attitude change or behavioral shifts.2,3,16,20 The role of school curricula in normalizing discussions about epilepsy remains underexplored. Despite evidence suggesting that curriculum integration, such as embedding epilepsy education in Life Skills, may foster inclusive values and reduce stigma, this strategy is still underutilized in South Africa’s public education system.9,10,16,20,21
Lastly, the potential of a Community-Based Participatory Research (CBPR) model in epilepsy education has not been fully realized. CBPR fosters collaboration between educators, healthcare providers, learners, families, and community leaders to co-create educational interventions that are both contextually and culturally relevant.22 This participatory approach ensures that biomedical insights are merged with indigenous knowledge systems, allowing interventions to be educational and also socially resonant and sustainable.8,23 Incorporating the voices and lived experiences of community stakeholders is crucial to bridging the disconnect between scientific understanding and traditional belief systems.
Epilepsy stigma in South Africa remains a significant barrier to quality education and social integration. Studies have shown that many individuals with epilepsy experience exclusion, bullying, and academic challenges due to widespread myths about the condition.2,3 Although previous interventions have attempted to raise awareness, the persistent misconceptions indicate a need for a structured, culturally relevant educational intervention.
There is a critical gap in school-based, curriculum-integrated epilepsy education that is participatory, inclusive, and tailored to the lived experiences of rural communities. Without addressing these gaps, learners with epilepsy remain vulnerable to bullying, dropout, and limited academic progress. A structured, evidence-based intervention is needed to equip both learners and educators with the knowledge and tools to promote inclusion and reduce stigma in primary school settings.
This project aims to address these issues by implementing and assessing the effectiveness of an epilepsy education intervention in primary schools of Limpopo Province. The study will evaluate the impact of this intervention on reducing stigma, improving knowledge, and fostering a supportive environment for individuals with epilepsy.
The primary objective of this study is to evaluate the effectiveness of the epilepsy education intervention in reducing stigma associated with epilepsy among primary school learners in Grades 5–7 in selected rural schools in Limpopo Province. This objective aligns with the overarching aim of fostering a more inclusive and supportive school environment for learners with epilepsy.
The primary outcome will be the change in epilepsy-related stigma scores among learners, measured using a structured stigma scale administered at:
a) Baseline (pre-intervention)
b) Immediate post-intervention
c) Follow-up at 4–6 weeks post-intervention
Intervention success will be defined as a statistically significant reduction in mean stigma scores from baseline to post-intervention, with sustained reduction at follow-up. Effect sizes (Cohen’s d or standardized mean difference) will also be reported to quantify the magnitude of change.
The secondary objectives, derived from the original study objectives, include:
a) To improve epilepsy-related knowledge among learners and teachers.
b) To improve attitudes toward individuals living with epilepsy.
c) To increase educators’ confidence and preparedness in managing seizures and delivering epilepsy-related content.
d) To implement and assess the feasibility of integrating epilepsy education into the Life Skills curriculum.
e) To explore participants’ experiences, perceived inclusion, and cultural beliefs related to epilepsy through qualitative inquiry.
Secondary outcomes will include:
a) Change in epilepsy knowledge scores
b) Change in attitude scores
c) Teacher self-efficacy scores related to seizure management
d) Qualitative themes reflecting perceived inclusion, stigma reduction, and curriculum feasibility
We hypothesize that participants exposed to the intervention will demonstrate statistically significant improvements in epilepsy-related knowledge, reductions in stigma, and increased confidence and skills in seizure management from baseline to post-intervention, with these effects sustained at follow-up.
This study will employ a quasi-experimental cluster design with matched comparison schools within a Community-Based Participatory Research (CBPR) framework. Eight rural primary schools will participate in the study. Four schools will receive the epilepsy education intervention (intervention group), and four demographically comparable schools will serve as comparison schools (control group). Schools will be matched based on key characteristics, including:
• Geographic location (rural context)
• School size
• Socioeconomic profile
• Grade structure (Grades 5–7 availability)
Due to logistical and ethical constraints within the public education system, random school assignment will not be feasible. Instead, schools will be selected in consultation with the district education office and matched to ensure comparability. Comparison schools will continue with the standard Life Skills curriculum without the integrated epilepsy education module during the study period. To ensure ethical fairness, the epilepsy education intervention will be offered to comparison schools after completion of post-intervention and follow-up data collection (delayed intervention model).
A cluster-based quasi-experimental design is appropriate because the intervention is delivered at the classroom/school level and contamination between learners within the same school would be unavoidable if individuals were randomized. The use of matched comparison schools strengthens internal validity by allowing between-group comparisons of change over time while maintaining feasibility within the rural educational context.
The study will employ a comprehensive, structured approach to implement its intervention, which can be broken down into several clear stages:
In this initial stage, we will engage with the local Department of Education and connect with school principals to establish a collaborative relationship. The objective is to carefully select and match eight rural primary schools based on specific criteria. These schools will then be divided into two groups: an intervention group of four schools and a comparison group of the remaining four schools.
Following the school allocation, we will distribute consent forms for parents and assent forms for learners to ensure ethical participation. This stage will also involve administering baseline surveys to evaluate knowledge, attitudes, and stigma related to epilepsy. Additionally, teachers will complete a baseline survey, and a qualitative needs assessment will be conducted to gather insights into the current school environment.
Following baseline assessment, Life Skills educators in intervention schools will participate in a structured training workshop prior to curriculum delivery. Training prepares educators to implement the epilepsy education modules and manage seizure-related scenarios confidently.
The epilepsy education curriculum will be delivered during scheduled Life Skills periods in intervention schools over a 6–8 week period. Implementation fidelity will be monitored throughout this phase. Comparison schools will continue standard Life Skills instruction during this time.
After the curriculum delivery period, we will conduct immediate assessments by administering post-intervention surveys to measure any changes in knowledge and attitudes. Feedback from teachers will also be gathered, along with focus group discussions involving both learners and teachers to capture their experiences and insights.
To assess the long-term impact of the intervention, we will re-administer the outcome surveys 4 to 8 weeks after the initial post-intervention assessment. Selected participants will participate in follow-up qualitative interviews and focus groups to evaluate knowledge retention and any sustained reductions in stigma.
Finally, once the T2 data collection is complete, the epilepsy curriculum will be delivered to the comparison schools, providing them with the same educational opportunities as the intervention schools. This stage aims to ensure that all schools benefit from the knowledge and skills developed during the study.
The study will employ a quasi-experimental cluster design with schools as the unit of allocation. Eight rural primary schools will participate. Four schools will be allocated to the intervention arm and four to a wait-list control arm. Allocation will be conducted in consultation with the district education office to minimize contamination between geographically proximate schools.
Baseline assessments will be conducted in all schools prior to implementation. Intervention schools will receive the epilepsy curriculum over 6–8 weeks, while control schools will continue the usual Life Skills instruction. Post-intervention and six-week follow-up assessments will be conducted in both groups. Control schools will receive the intervention after follow-up data collection is complete.
The study will be conducted in selected rural primary schools within the Limpopo Province, South Africa. These schools are representative of low-resource settings with limited access to health education on neurological conditions like epilepsy.
In this study, the primary participants will be primary school learners in Grades 5 to 7, who bring their unique perspectives and experiences. They are guided by Life Skills educators, who play a crucial role in imparting essential knowledge and skills. Additionally, curriculum advisors contribute their expertise, ensuring that the educational content is relevant and effective for the students. Together, these individuals create a collaborative environment that enhances young learners’ learning experience. Inclusion Criteria for the participants will be as follows:
• All learners enrolled in Grades 5 to 7 at selected schools in Vhembe District, including those with or without epilepsy.
• Assent to participate (with parental/guardian consent provided).
• Age range starting from 10 years and above (Grade 5–7 age group in South Africa).
• Able to participate in standard Grade 5–7 Life Skills instruction.
• Operationalization of the Comprehension Criterion
All learners enrolled in Grades 5–7 at participating schools will be eligible to participate in the intervention, including learners with or without epilepsy, provided parental consent and learner assent are obtained. The intervention is delivered universally at the classroom level and does not require disclosure of medical status. No learner will be excluded on the basis of having epilepsy, and no learner will be required to disclose a diagnosis for participation. This approach ensures inclusivity and prevents unintended stigmatization.
The eligibility criterion “ability to comprehend age-appropriate content” is operationalized using objective and contextually appropriate indicators. Eligibility is primarily determined by enrollment in Grades 5–7 within the standard Life Skills curriculum, as the intervention is aligned with this grade level. Learners must demonstrate functional participation in routine classroom instruction conducted in the school’s language of instruction (Xitsonga, Tshivenda, or English). Functional comprehension will be confirmed through consultation with the class teacher based on regular academic participation, rather than through formal cognitive screening. No additional standardized cognitive screening instrument will be administered for research eligibility purposes.
Learners with documented severe cognitive impairments that substantially limit participation in standard classroom instruction, as identified through school records and educator consultation, may be excluded from survey-based outcome assessments to ensure the validity of questionnaire responses. However, such learners will not automatically be excluded from receiving the educational intervention unless advised by school authorities for pedagogical or ethical reasons. Because lived experience with epilepsy may influence baseline knowledge, attitudes, and stigma dynamics, the potential presence of learners with epilepsy within classrooms will be acknowledged in the interpretation of findings. However, epilepsy status will not be systematically collected in survey instruments in order to protect confidentiality and avoid unintended disclosure.
• Currently serving as curriculum advisors for Life Skills education and natural sciences in the selected circuits of Vhembe.
• Actively involved in curriculum support or teacher development programs.
• Provide informed consent.
In estimating the sample sizes for our study, we anticipate a range of 400 to 480 learners. This calculation assumes two classes in each of the eight schools, with each class consisting of 25 to 30 students. Due to the quasi-experimental implementation nature of the study and the use of existing school populations, the sample size will be determined by the number of eligible learners in the participating schools rather than by a priori power calculation. All eligible learners in the selected schools will be invited to participate. Additionally, we expect 16 teachers to participate in the study, with 2 assigned per school across the 8 institutions. Moreover, we estimate that four to six curriculum advisors will participate in the project.
Following ethical clearance from the University of Venda Human and Clinical Trial Research Ethics Committee (HCTREC), formal permission will be sought from the Limpopo Department of Education and Vhembe District Education Office. Approval from circuit managers and school principals will be obtained to access schools and participants.
A list of Life Skills curriculum advisors will be obtained from the district office. Using purposive sampling, 4–6 actively involved advisors will be invited via the Department of Education. Each will receive an invitation letter, information sheet, and consent form. Consenting advisors will join co-development workshops and training activities.
From 8 selected primary schools, principals will help identify two Life Skills educators per school. These teachers will be invited via on-site briefing sessions. Informed consent will be obtained before participation in epilepsy education workshops.
Grade 5 to 7 classes from participating schools will be included. Parental consent forms and learner information sheets will be distributed by teachers. Upon receipt of written consent, learners will be briefed and asked for assent. Only those with both parental consent and learner assent will participate.
Materials and resources
The curriculum materials will consist of custom-designed modules focused on epilepsy education, which will be integrated into life skills education. This approach ensures that students receive comprehensive knowledge about epilepsy while developing essential life skills. To support educators in delivering this content effectively, a toolkit will be developed. This toolkit will include a variety of resources, such as training manuals that guide instructors on best practices, activity guides that outline engaging ways to teach the material, and first aid reference charts for quick access to important information. Additionally, digital multimedia resources will be available, including videos, animations, and infographics, which will enhance the learning experience and provide diverse methods of engagement for learners.
Evaluation instruments
This study employs a mixed-methods evaluation framework combining quantitative surveys and qualitative inquiry to assess changes in knowledge, attitudes, stigma, confidence, and perceived inclusivity.
Quantitative outcomes will be assessed using structured learner and teacher questionnaires specifically adapted for use in rural primary schools in Limpopo Province. Separate but complementary instruments will be administered at baseline (T0), immediately post-intervention (T1), and at 4–8-week follow-up (T2) to assess change over time.
The learner questionnaire measures four domains: (1) epilepsy knowledge, (2) attitudes toward peers with epilepsy, (3) epilepsy-related stigma and misconceptions, and (4) seizure first-aid response knowledge. The knowledge domain includes items assessing understanding of epilepsy as a neurological condition, recognition of seizure signs, beliefs about curability, and contagion myths. Attitude items assess willingness to interact with and include peers with epilepsy in classroom and social activities. Stigma-related items assess endorsement of supernatural causation beliefs, fear responses, and tendencies toward social distancing. First-aid items assess recognition of appropriate seizure management steps and harmful practices to avoid.
Learner knowledge and first-aid items are scored dichotomously (correct = 1; incorrect or “not sure” = 0). Attitude and stigma items are coded so that higher composite scores reflect more positive attitudes and lower stigma. Domain scores are calculated by summing relevant items, allowing for comparison across time points.
The teacher questionnaire assesses knowledge of epilepsy, attitudes toward inclusion, beliefs about its causes, confidence in seizure management, and self-efficacy in delivering epilepsy education. Knowledge is assessed through structured and open-ended items. The attitude and self-efficacy domains use a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree), with negatively worded items reverse-scored. Composite scale scores will be computed for attitudes and self-efficacy domains.
The instruments are adapted from previously validated epilepsy knowledge and stigma tools used in school and community-based research and were contextualized for rural South African primary school settings. To ensure cultural and linguistic appropriateness, the instruments will undergo expert panel review involving neurologists, public health specialists, and Life Skills educators to establish content validity. Where required, questionnaires will be translated into Tshivenda and Xitsonga using forward translation and independent back-translation procedures to ensure semantic equivalence. Cognitive interviewing and pilot testing with a small group of learners will be conducted to assess clarity, comprehension, and cultural relevance prior to full implementation.
Internal consistency reliability will be evaluated using Cronbach’s alpha for multi-item domains (attitudes and stigma), with α ≥ 0.70 considered acceptable. Where sample size permits, exploratory factor analysis will be conducted to examine the underlying scale structure. These procedures ensure that outcome measures are culturally appropriate, psychometrically sound, and suitable for repeated measurement in this context. The full instruments are provided in the Supplementary Materials to enhance transparency and replicability.
To enhance clarity and reproducibility, the key study constructs are operationally defined as follows:
Epilepsy knowledge refers to factual understanding of epilepsy as a medical condition and appropriate responses to seizures. It will be operationalized as a composite knowledge score derived from objective items assessing: (i) causes and nature of epilepsy, (ii) seizure recognition, (iii) seizure first-aid/response, (iv) treatment and prognosis, and (v) myths/misconceptions (including culturally rooted explanations). Knowledge will be measured primarily among learners and teachers using a structured questionnaire at baseline, immediately post-intervention, and at follow-up.
Attitudes toward epilepsy refer to learners’ and teachers’ evaluative beliefs and willingness to interact with, include, and support individuals living with epilepsy in school contexts. Attitudes will be operationalized using a Likert-scale attitude index assessing: (i) comfort with social interaction, (ii) willingness to learn/play/work with a learner with epilepsy, (iii) perceived capabilities of people with epilepsy, and (iv) endorsement of inclusion in classroom and school activities. Attitudes will be measured among learners and teachers at baseline, immediate post-intervention, and follow-up.
Epilepsy-related stigma refers to negative stereotypes, social distancing, fear, and discriminatory beliefs or behaviours directed toward individuals with epilepsy. Stigma will be operationalized using a stigma score/index derived from Likert-type items assessing: (i) social distancing intentions, (ii) shame/avoidance, (iii) perceived dangerousness or contagion beliefs, and (iv) discriminatory expectations (e.g., exclusion from activities). Stigma will be measured among learners and teachers at baseline, immediate post-intervention, and follow-up.
An inclusive school environment is one in which learners with epilepsy are accepted, supported, and able to participate safely and meaningfully in classroom and school activities without discrimination. This construct will be operationalized using process and qualitative indicators, including: (i) teacher self-efficacy and preparedness in seizure management and inclusive pedagogy (survey items and teacher reflections), (ii) observed classroom practices and learner engagement (observation checklists), and (iii) perceived changes in peer behaviour, bullying/exclusion, and classroom participation described in focus groups and interviews. An inclusive environment will be explored through teachers, learners, and curriculum advisors, and triangulated across qualitative and observational data.
The study procedure is structured into six phases, each designed to systematically address the educational needs surrounding epilepsy in rural schools and to promote an inclusive learning environment for all students.
To initiate the study, a comprehensive needs assessment is conducted. This involves baseline surveys and focus groups engaging learners, educators, and curriculum advisors. The aim is to evaluate the existing knowledge and beliefs about epilepsy within these communities. Critical factors such as perceived stigma, knowledge gaps, and contextual elements that influence health education in rural schools are systematically documented. This analysis of findings serves as the foundation for effective content development and stakeholder engagement strategies.
Building on the insights gathered from the needs assessment, the next phase focuses on the collaborative development of a culturally relevant and age-appropriate curriculum on epilepsy. Input from health experts, including neurologists and psychologists, as well as educators and policymakers, ensures that the curriculum is scientifically sound and contextually appropriate. Interactive and inclusive teaching methodologies, such as role-playing, storytelling, and peer discussions, are integrated to promote engagement and understanding. Additionally, the curriculum is aligned with the national life skills education policy to enhance its scalability and legitimacy.
The intervention is described as culturally sensitive because it explicitly addresses locally held beliefs, explanatory models, and social meanings associated with epilepsy within rural Limpopo communities. In this context, epilepsy is often attributed to supernatural causes such as witchcraft, ancestral displeasure, or spiritual possession. The curriculum, therefore, incorporates structured dialogue that acknowledges these beliefs while introducing biomedical explanations in a respectful, non-dismissive manner.
The curriculum includes specific modules that:
• Explore common community beliefs about epilepsy (e.g., witchcraft, contagion, curses).
• Compare traditional explanatory models with biomedical explanations of epilepsy.
• Address myths and misconceptions using interactive discussion and storytelling.
• Emphasize respect for cultural beliefs while providing evidence-based medical information.
• Promote empathy and inclusion rather than confrontation of belief systems.
Teaching strategies such as role-playing, storytelling, and scenario-based discussions will be used to help learners critically reflect on prevailing beliefs and explore alternative perspectives in a safe, structured environment.
Cultural adaptation will be conducted through a structured Community-Based Participatory Research (CBPR) approach, involving:
Baseline surveys and focus groups will identify locally prevalent misconceptions and stigma patterns.
Curriculum advisors, Life Skills educators, community representatives, and health professionals will collaboratively review and adapt educational materials.
Neurologists and public health experts will ensure biomedical accuracy while maintaining contextual relevance.
Draft materials will be piloted with small learner groups to assess clarity, cultural resonance, and acceptability.
Feedback from stakeholders will be systematically documented and incorporated into revised materials.
All stages of cultural adaptation will be documented through workshop minutes and stakeholder feedback summaries, version tracking of curriculum revisions, field notes from pilot testing and documentation of modifications made based on community input. This documentation will enhance transparency and allow replication or adaptation in other cultural settings.
With the curriculum developed, the next step involves conducting structured workshops for educators and facilitators. These workshops cover essential topics, including the basics of epilepsy, seizure management, and first aid protocols. Emphasis is placed on inclusive pedagogy, equipping educators with classroom strategies to support learners with epilepsy effectively. To reinforce learning, simulation sessions and role plays are implemented. Participants receive a comprehensive training manual and access to digital support tools, while a peer-support network is established to foster ongoing mutual learning and sustainability among educators.
Educator training will consist of a structured 8-hour workshop delivered in one full day. Training includes didactic instruction, interactive discussion, and practical seizure first-aid simulation. Educators must demonstrate correct first-aid procedures during simulation exercises prior to implementation to ensure competence in delivery.
The epilepsy curriculum will be implemented in intervention schools during scheduled Life Skills periods, while comparison schools continue standard instruction. Delivery will follow the standardized facilitator manual. Engagement and adherence will be monitored using teacher logs and classroom observations. After completion of follow-up data collection, comparison schools will receive the curriculum (delayed intervention model).
The epilepsy education intervention consists of six structured Life Skills lessons delivered over 6–8 consecutive weeks during scheduled class periods. Each lesson is 60 minutes, resulting in approximately 6 hours of learner exposure time. All sessions are delivered by trained Life Skills educators within their own classrooms. Prior to implementation, participating educators complete a standardized 8-hour in-person training workshop facilitated by the research team. The training covers epilepsy fundamentals, seizure recognition, first-aid simulation, inclusive pedagogy, and procedures for curriculum delivery. Educators must demonstrate competence in seizure first-aid simulation before delivering the lessons.
The intervention uses a standardized facilitator manual with grade-sensitive adaptation in complexity. For Grade 5, content focuses on basic understanding of the brain, defining epilepsy as a medical condition, recognizing common seizure signs, and identifying simple first-aid responses. For Grade 6, lessons emphasize causes of epilepsy, addressing myths and misconceptions (including cultural beliefs such as witchcraft), correcting contagion myths, and promoting peer inclusion. For Grade 7, the content includes advanced seizure recognition, structured first-aid role-play simulations, stigma-reduction strategies, and leadership in inclusive classroom practices. Across all grades, interactive methods such as role-play, myth-versus-fact discussions, storytelling, and scenario-based learning are used to enhance engagement.
Standardized materials include a facilitator manual, slide presentations, myth–fact flashcards, seizure first-aid posters, structured role-play scenarios, and learner worksheets. All materials are delivered face-to-face within the school setting during regular Life Skills periods. Teacher training is delivered by the principal investigator and a trained public health team member. Learner sessions are delivered exclusively by trained Life Skills educators. Fidelity observations are conducted by a research team member not directly involved in classroom teaching.
Fidelity is assessed using structured classroom observation checklists and teacher reflection logs. A lesson is considered “delivered as intended” if at least 80% of predefined lesson objectives are completed, seizure first-aid steps are demonstrated accurately (protect head, turn to side, do not restrain, do not insert objects in mouth), and at least one interactive learning activity is implemented. At least one session per school will be directly observed by the research team. Any deviations from the manual will be documented to allow transparent reporting of implementation variability.
Evaluation occurs on two levels: process and outcome. Process evaluation utilizes observation checklists to assess the fidelity of curriculum delivery and student engagement. Qualitative feedback is solicited from both teachers and learners through structured reflections and focus group discussions, highlighting implementation challenges and best practices via interviews with educators and school leaders.
Outcome evaluation involves conducting pre- and post-intervention surveys among learners, teachers, and parents, focusing on key areas such as knowledge of epilepsy, seizure response capabilities, changes in attitudes, and stigma reduction. Further qualitative data is gathered through focus groups and interviews, exploring shifts in perception, inclusion, and behaviour. Where feasible, comparisons are drawn between outcomes in intervention schools and control schools to assess overall efficacy.
To assess both short-term learning gains and the persistence of intervention effects, quantitative outcome assessments will be conducted at three timepoints:
1. Baseline (T0): Prior to implementation of the epilepsy education curriculum
2. Immediate post-intervention (T1): Within one week after completion of the final lesson/session
3. Follow-up (T2): 4–8 weeks post-intervention to assess knowledge retention and sustained changes in attitudes and stigma
At each time point, learners and teachers will complete the same structured questionnaire assessing epilepsy knowledge, attitudes toward epilepsy, and epilepsy-related stigma. The follow-up assessment will be scheduled in collaboration with each participating school to minimise disruption to teaching time and will be administered during routine Life Skills periods where feasible.
This addition allows comparison of immediate post-intervention changes (T0→T1) with retained effects over time (T0→T2) and potential attenuation or strengthening of effects between immediate and follow-up assessments (T1→T2). Where schools serve as comparison sites (if applicable), the same assessment schedule (T0, T1, T2) will be applied to both intervention and comparison schools.
To ensure the longevity of the project, a train-the-trainer model is developed. This empowers local educators to continue delivering the curriculum independently. Refreshments and mentorship workshops are scheduled to promote sustained learning. Additionally, findings from the study are shared with local education departments, health authorities, and policy stakeholders, advocating for the integration of epilepsy education into the national life skills curriculum. This approach not only enhances the educational framework but also aims to foster an enduring change in attitudes and practices surrounding epilepsy in rural schools.
Through these phases, the study seeks to establish a robust educational model that addresses the complexities of teaching about epilepsy while promoting a supportive and inclusive learning environment.
Quantitative data from learner and teacher questionnaires will be entered into Statistical Package for Social Sciences (SPSS) and analyzed using a predefined statistical plan. Descriptive statistics will summarize demographic characteristics and baseline outcome measures. Continuous variables (e.g., knowledge, attitude, stigma scores) will be reported using means and standard deviations or medians and interquartile ranges, depending on distributional normality. Categorical variables will be summarized using frequencies and percentages.
Given the clustered design (learners nested within schools), intervention effects will be evaluated using mixed-effects regression models with random effects for school to account for intra-cluster correlation. Fixed effects will include group (intervention vs comparison), time (baseline, immediate post-intervention, follow-up), and the group × time interaction term to assess differential change over time. Where appropriate, analyses will adjust for relevant covariates such as age, gender, and baseline score. If substantial intra-class correlation is observed at the classroom level, additional random effects for class will be considered where model convergence permits.
Repeated measures analysis will be conducted to examine within-participant changes across time points. For comparisons between intervention and comparison schools, a difference-in-differences approach will be applied using the group × time interaction term. Assumptions of normality and homogeneity will be assessed prior to model selection. Where outcomes are not normally distributed, appropriate transformations or non-parametric alternatives will be considered.
Missing data will first be examined to determine patterns (missing completely at random, missing at random, or not at random). If data are judged to be missing at random, multiple imputation techniques will be employed. Sensitivity analyses will compare complete-case and imputed results to assess robustness. Statistical significance will be set at p < 0.05.
Internal consistency reliability of multi-item domains (e.g., attitudes, stigma, self-efficacy) will be assessed using Cronbach’s alpha. Where sample size permits, exploratory factor analysis may be conducted to examine scale structure.
Qualitative data from focus group discussions, semi-structured interviews, teacher reflection logs, and classroom observations will be analyzed using reflexive thematic analysis as described by Braun and Clarke.
The analytic process will follow six stages:
1. Familiarization – Transcripts will be read repeatedly to gain immersion in the data.
2. Initial Coding – Meaningful units of text will be coded inductively and deductively, guided by the study objectives (knowledge change, stigma reduction, inclusion, cultural beliefs, implementation feasibility).
3. Theme Development – Codes will be grouped into broader candidate themes.
4. Theme Review – Themes will be refined to ensure internal coherence and distinction from one another.
5. Theme Definition and Naming – Clear definitions will be developed for each theme.
6. Interpretation – Themes will be interpreted in relation to quantitative findings and relevant literature.
Two members of the research team will independently code a subset of transcripts and discuss discrepancies to enhance credibility. An audit trail will be maintained to document analytic decisions. Triangulation will occur across data sources (learners, teachers, curriculum advisors, observations) to strengthen trustworthiness. Reflexive journaling will be used to acknowledge the researcher’s positionality.
This study adopts a convergent parallel mixed-methods design, whereby quantitative and qualitative data are collected during the same intervention period, analyzed separately, and integrated during interpretation.
Integration will occur at three levels:
1. Design Level – Both data strands are implemented concurrently to capture complementary dimensions of intervention impact.
2. Methods Level – Qualitative findings will help explain quantitative trends, including unexpected or heterogeneous effects.
3. Interpretation Level – Findings will be merged using joint display tables that present quantitative outcomes (e.g., changes in mean stigma scores) alongside related qualitative themes (e.g., narratives describing reduced bullying or increased empathy).
Convergent findings will strengthen confidence in the intervention’s effectiveness, while divergent findings will be explored to identify contextual or cultural explanations.
Ethical considerations
Ethical approval was obtained from the University of Venda Human and Clinical Trial Research Ethics Committee (HCTREC) number FHS/25/PDC/09/1306. Written informed consent and assent will be obtained from all participants. Written Informed consent will be obtained from the parents or legal guardians of all participating minors before their involvement in the study. In addition, age-appropriate assent will be sought directly from the minors to ensure that their participation is voluntary and understood. The consent and assent process will follow ethical guidelines for research with children and will be overseen by the institutional research ethics committee. Participant confidentiality will be maintained using anonymized data, and digital data will be stored securely. Participants may withdraw at any time without consequence. Emotional risks will be minimized, and referral mechanisms to school-based psychosocial services will be in place. The study adopts an inclusive approach. Learners with epilepsy will participate alongside their peers without being singled out or identified. No disclosure of medical conditions will be required, and confidentiality will be strictly maintained.
To protect confidentiality during survey administration, questionnaires will not collect names or identifiable health information. Each participant will be assigned a unique study code. Surveys will be completed individually during class time with seating arranged to reduce visibility of responses. Completed questionnaires will be placed in sealed envelopes and collected immediately by the research team.
For focus group discussions, participation will be voluntary and conducted in small groups in a private setting within the school. Participants will be reminded not to disclose personal medical information and to respect the confidentiality of peers. Ground rules emphasizing privacy and respect will be established at the beginning of each session.
Teachers will not have access to individual learner responses. Data will be stored in password-protected files accessible only to the research team. Reporting will use aggregated data to prevent identification of individual participants or schools.
The school-based epilepsy education intervention in rural Limpopo primary schools is anticipated to yield significant improvements in knowledge, attitudes, and behaviours regarding epilepsy among both students and educators. Similar to the study conducted in Turkey, which reported positive attitudes towards epilepsy with an increase in knowledge regarding epilepsy.24 Central to this initiative is the implementation of a culturally relevant, curriculum-integrated program grounded in the Community-Based Participatory Research (CBPR) model. This approach aims to effectively reduce epilepsy-related stigma and misconceptions, particularly those stemming from traditional beliefs, such as witchcraft.
Expected outcomes include an enhanced understanding of epilepsy as a medical condition among students, while educators will develop increased confidence in teaching about epilepsy and managing seizures within the classroom setting. Furthermore, the intervention seeks to cultivate a more inclusive and supportive learning environment, thereby reducing the likelihood of marginalization or exclusion of children with epilepsy.
To ensure long-term sustainability and maximize community impact, the program employs a train-the-trainer model along with community engagement strategies. Additionally, the initiative is poised to inform policy recommendations for the integration of epilepsy education into the national life skills curriculum. This provides a scalable model for future public health interventions in educational settings, promoting greater awareness and support for individuals with epilepsy within the community.
The study will be conducted in accordance with the Declaration of Helsinki and was approved by the Human and Clinical Trial Research Ethics Committee (HCTREC) of the University of Venda (FHS/25/PDC/09/1306).
Written Informed consent will be obtained from all subjects involved in the study.
This manuscript reports a study protocol; therefore, no dataset has yet been generated. Upon completion of data collection and analysis, de-identified quantitative datasets will be deposited in the project’s Open Science Framework (OSF) repository in accordance with journal and institutional policies.
The shared materials will include:
• De-identified raw quantitative data
• A detailed data dictionary and codebook describing variable names, coding schemes, missing data codes, and clustering structure (school/class level)
• Scoring algorithms for composite indices
• Statistical analysis scripts (where applicable)
• Final versions of intervention materials, facilitator manuals, and fidelity monitoring tools
All datasets will be fully anonymized prior to sharing. Direct identifiers will be removed, and indirect identifiers (e.g., school names or small subgroup characteristics) will be aggregated or masked to minimize re-identification risk. Given that the study involves minors, access to certain datasets may be subject to controlled access procedures where required by the ethics committee or institutional data governance policies. A “readme” file will accompany the dataset, providing clear instructions for data use, variable definitions, clustering structure, and guidance for replication analyses.
OSF: Implementing and Assessing the Effectiveness of Epilepsy Education Intervention in Primary Schools in Limpopo Province: https://doi.org/10.17605/OSF.IO/MY87S (Makhado and Makhado, 2025)
The project contains the following extended data:
I want to thank the University of Venda for allowing us to conduct our research project. We also appreciate the University Staff Doctorate Programme (USDP) for providing us with financial support for the Epilepsy Research Project, which is an important part of our study.
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Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Attitude, Epilepsy, Knowledge, Peer education, Seizure first aid.
Is the rationale for, and objectives of, the study clearly described?
Partly
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Partly
Are the datasets clearly presented in a useable and accessible format?
Not applicable
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Pharmacoepidemiology
Is the rationale for, and objectives of, the study clearly described?
Yes
Is the study design appropriate for the research question?
Yes
Are sufficient details of the methods provided to allow replication by others?
Partly
Are the datasets clearly presented in a useable and accessible format?
Yes
Competing Interests: No competing interests were disclosed.
Reviewer Expertise: Attitude, Epilepsy, Knowledge, Peer education, Seizure first aid.
Alongside their report, reviewers assign a status to the article:
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Provide sufficient details of any financial or non-financial competing interests to enable users to assess whether your comments might lead a reasonable person to question your impartiality. Consider the following examples, but note that this is not an exhaustive list:
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