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Curriculum, Epilepsy, Effectiveness, Education, Intervention
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Makhado TG and Makhado L. Implementing and Assessing the Effectiveness of Epilepsy Education Intervention in Primary schools in Limpopo province: A Protocol [version 1; peer review: awaiting peer review]. F1000Research 2025, 14:865 (https://doi.org/10.12688/f1000research.169687.1)
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Study Protocol
Implementing and Assessing the Effectiveness of Epilepsy Education Intervention in Primary schools in Limpopo province: A Protocol
[version 1; peer review: awaiting peer review]
PUBLISHED 03 Sep 2025
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Abstract
Corresponding author:
Thendo Gertie Makhado
Competing interests:
No competing interests were disclosed.
Grant information:
The author(s) declared that no grants were involved in supporting this work.
Copyright:
© 2025 Makhado TG and Makhado L.
This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
How to cite: Makhado TG and Makhado L. Implementing and Assessing the Effectiveness of Epilepsy Education Intervention in Primary schools in Limpopo province: A Protocol [version 1; peer review: awaiting peer review]. F1000Research 2025, 14:865 (https://doi.org/10.12688/f1000research.169687.1)
First published: 03 Sep 2025, 14:865 (https://doi.org/10.12688/f1000research.169687.1)
Latest published: 03 Sep 2025, 14:865 (https://doi.org/10.12688/f1000research.169687.1)
Introduction
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.
This study aims to implement and assess the effectiveness of an epilepsy education intervention in Primary Schools to improve epilepsy knowledge, reduce stigma, and create an inclusive educational environment.
This project will incorporate the following objectives:
• Develop a comprehensive curriculum integrating epilepsy into the life skills subjects taught in primary schools.
• Train educators and facilitators to deliver the curriculum to teachers and learners.
• Implement the epilepsy life skills curriculum in selected rural schools.
• Evaluate the effectiveness of the intervention on the knowledge and attitudes of teachers and learners towards epilepsy.
• Identify gaps and areas of improvement for future interventions.
Research design and methods
Study design
This study will employ a Community-Based Participatory Research (CBPR) design, which emphasizes collaborative partnership and co-learning between researchers, primary school stakeholders, and community members. The CBPR model supports shared decision-making across all phases, needs assessment, curriculum co-development, educator training, curriculum implementation, and evaluation.
Study setting
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.
Participants
In this initiative, the primary participants are composed of primary school learners from 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 form a collaborative environment aimed at enhancing the learning experience for young learners.
Inclusion Criteria for the participants will be as follows:
Learners
• Enrolled in Grade 5 to 7 at selected schools in Vhembe.
• Able to comprehend age-appropriate epilepsy education content.
• Assent to participate (with parental/guardian consent provided).
• Age range starts from 10 and above (Grade 5–7 age group in South Africa).
Teachers (Educators)
• Must be Life Skills educators at selected primary schools in the Vhembe District.
• Must be actively teaching Grades 5 to 7.
• Willing and able to participate in training and intervention activities.
• Provide informed consent.
• Approximately 25–65 years.
Curriculum Advisors
• Currently serving as curriculum advisors for Life Skills education 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 is based on having two classes in each of the eight schools, with each class consisting of 25 to 30 students. Additionally, we expect to have 16 teachers involved in the study, with two teachers assigned per school across the eight institutions. Moreover, we estimate that there will be between four to six curriculum advisors participating in the project.
Identification, selection, and recruitment of participants
Engagement with educational authorities
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.
Curriculum advisors
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.
Teachers
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.
Learners
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 consist of custom-designed modules focused on epilepsy education, which are 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 has been developed. This toolkit includes 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 are available, including videos, animations, and infographics, which enhance the learning experience and provide diverse methods of engagement for students.
Evaluation instruments
The research will employ a mixed-methods approach, incorporating both quantitative and qualitative components. To assess epilepsy knowledge, attitudes, and stigma among participants, pre- and post-intervention surveys will be conducted. This quantitative aspect aims to provide measurable data on changes in understanding and perceptions following the intervention.
In addition to the quantitative surveys, the qualitative component will gather in-depth insights through various methods. Focus group discussions will be guided by carefully designed prompts to facilitate open conversations. Interview protocols will be developed to conduct individual interviews, while teacher reflection logs and observation checklists will serve to document and analyze participants’ experiences and interactions during the intervention.
Furthermore, the logistical aspects of the training will require specific resources. Workshop supplies will be essential for conducting the sessions effectively. Simulation kits will be utilized for first-aid practice, offering participants hands-on experience. Additionally, ICT equipment will be necessary to enhance multimedia delivery, ensuring that training materials are engaging and accessible for all participants.
Procedure
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.
Phase 1: Needs assessment
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.
Phase 2: Curriculum development
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.
Phase 3: Training of educators and facilitators
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.
Phase 4: Curriculum implementation
The curriculum is then piloted in a selection of 3 to 5 rural schools, allowing for real-world testing and refinement of teaching methods and content. Over the course of 6 to 8 weeks, the curriculum is implemented during regular life skills periods, incorporating supplementary materials such as interactive visuals and community engagement sessions. Family outreach initiatives are also included to extend the benefits beyond the classroom. Throughout this phase, engagement is closely monitored via teacher logs, student attendance records, and feedback reports, ensuring responsiveness and adaptability.
Phase 5: Process and outcome evaluation
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.
Phase 6: Sustainability and policy engagement
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.
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.
Expected results
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. 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.
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how to cite this article
Makhado TG and Makhado L. Implementing and Assessing the Effectiveness of Epilepsy Education Intervention in Primary schools in Limpopo province: A Protocol [version 1; peer review: awaiting peer review]. F1000Research 2025, 14:865 (https://doi.org/10.12688/f1000research.169687.1)
NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.
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