By: Khomotso Fredah Matlala

Photo Credit: www.depositphotos.com

Advocating for Children with Epilepsy: From Understanding to Action

A child living with epilepsy is navigating more than seizures as they are growing up within systems that can either protect development or compound harm (World Health Organization, [WHO] 2024). These systems include family, school, healthcare and policy. Approximately 50 million people are affected by epilepsy worldwide, with nearly 80% living in low- and middle-income countries; up to 70% of these individuals could become seizure-free with appropriate diagnosis and treatment, yet large treatment gaps persist and stigma remains pervasive (WHO, 2024). 

Studies highlight that children and adolescents are the most vulnerable populations affected by epilepsy with an estimated occurrence rates spanning from 41 to 187 per 100 000 children (Makhado et al., 2024). A recent meta-analysis further reveals that childhood epilepsy is a major public health concern especially in third-world continents such as Africa where nearly 1 in 50 children are affected due to factors such as parasitic infections and birth complications (Biset et al., 2024. Despite the high prevalence, research highlights that there is a significant lack of preventive and treatment resources across the continent (Biset et al., 2024; Wilmshurst et al.,2018). 

Emerging research also highlights the complexity of epilepsy diagnosis and management. For instance, absent seizures are sometimes misidentified as dissociative symptoms especially in patients with comorbid mental disorders such as binge-eating disorders (Marini et al., 2026; Mahr et al., 2020). This neurological perspective demonstrates that antiepileptic treatment may not only reduce seizures but also improve cognitive functions such as memory and attention and associated behavioural symptoms. Such findings emphasise the need for integrated medical evaluations and broader community-based screening approaches (Biset et al., 2024; Marini et al., 2026; Wilmshurst et al., 2018).

Advocating for children with epilepsy, from birth through adolescence, requires a rights-based approach that evolves alongside the child’s physiological and social development. Effective advocacy must address both clinical seizure management and the often invisible, day-to-day burden carried by children and their families. In response to these systemic and developmental challenges, a structured advocacy framework is necessary.

A Right-Based Advocacy Framework: 

Epilepsy management must be framed as a fundamental right to the child rather than a privilege (Wilmshurst et al., 2018). Following the World Health Assembly’s global standards, the advocacy framework should focus on the child as whole (Wilmshurst et al., 2018). This implies that health should be defined holistically as a state of complete physical, mental and social well-being, rather than the absence of seizures (Wilmshurst et al., 2018). With over 11 million children under 15 years of age affected worldwide. National strategies that prioritize developmental health and long-term quality of life must be implemented (Wilmshurst et al., 2018). Taken together, these findings reinforce the need to move beyond isolated clinical management towards integrated, developmentally informed advocacy approaches.

Infancy and Toddlerhood (0-5 years): Prevention and Early- Intervention

The first five years of life represents a critical window for intervention, as the highest incidence of epilepsy occurs during the first year (Biset et al., 2024). During this stage, advocacy should prioritize early and accurate diagnosis. Delays or misdiagnosis are associated with poorer cognitive outcomes and reduced IQ (Benn et al., 2014). Studies emphasize that a shorter waiting period from seizure onset to clinical assessment is directly linked to better prognoses (Khan et al., 2020). Early-onset epilepsy is frequently associated with significant cognitive morbidity, making the recognition of specific seizure types and underlying causes urgent to mitigate damage to the maturing brain. Accurate diagnosis also prevents unnecessary exposure to medication and ensures appropriate intervention. 

Beyond clinical management, a diagnosis during this stage carries an impact that pervades all aspects of family life.  Evidence shows that childhood epilepsy places immense strain on parents and caregivers, often leading to increased levels of stress, anxiety, and depression (Carter et al., 2022). For these families, much of the management is “invisible,” affecting everything from sleep and social activities to long-term educational outcomes. Therefore, advocacy in these early years must be holistic, addressing not just the developing brain, but the mental health and quality of life of the entire family unit (Carter et al., 2022). Advocacy during this stage must therefore extend beyond the child to include family-centred support, ensuring that caregivers receive adequate information, guidance, and psychological support from the point of diagnosis. 

Middle Childhood (6-12 years): Education and Social Integration

As children enter school, advocacy shifts towards minimizing social exclusion and managing academic performance to ensure a supportive environment for development. Epilepsy is associated with significant physical, psychological and social issues, this includes concentration and memory problems and social isolation resulting from the stigma, discrimination and reduced quality of life (Makhado et al., 2024). 

During this stage, the classroom often becomes a site for exclusion where stigma and bullying can lead children to conceal their condition (Sekgobela, 2025). Such exclusionary experiences can adversely affect a child’s emotional intelligence and academic achievement, as they are forced to navigate power imbalances and a lack of peer understanding (Erasmus et al., 2022; Sekgobela, 2025). 

To address these challenges, advocacy should prioritise school-based interventions. These include training educators to manage seizures effectively and implementing awareness programmes to foster empathy and reduce stigma among peers (Erasmus et al., 2022). Additionally, promoting child autonomy is essential. Programmes such as ACINDES, which use play-based approaches, enable children to actively engage in self-management and build confidence in both social and academic contexts (Singh, 2024).

Adolescence (13-18 years): Identity, Autonomy, and Comorbidities

Adolescence presents unique challenges, where the desire for independence often conflicts with parental overprotection. This tension can hinder the development of self-reliance and exacerbate the psychosocial burden of epilepsy. Adolescents with epilepsy are at an increased risk for low self-esteem, anxiety and depression as they negotiate their identity in relation to their peers (Ettinger et al., 2022). 

Advocacy during this stage must also account for the intersection of neurological and psychiatric comorbidities. Diagnostic clarity remains essential as certain seizure types, such as absence seizures, can be misidentified as dissociative symptoms in patients with comorbid conditions like Binge-eating disorder (BED), necessitating integrated medical evaluations to ensure appropriate treatment (Mahr et al., 2020). Consequently, a central advocacy priority is the structured transition from paediatric to adult care systems. This includes addressing practical restrictions on driving and independent living while providing adolescents with the vocational and psychological tools necessary to manage their condition autonomously in adulthood (Geerlings et al., 2021).

While individual- and family-level interventions are essential, sustainable change ultimately depends on systemic and policy-level action.

Policy Recommendations

Policy recommendations for advocating for children with epilepsy requires a multidimensional policy approach that integrates healthcare, legislation, and community engagement (Wilmshurst et al., 2018). Drawing on the World Health Assembly (WHA) Resolution, there are several priorities that emerge. 

At governance level, governments must strengthen leadership, implement contextually relevant national healthcare plans, and develop child specific clinical guidelines to address existing gaps in paediatric care (Wilmshurst et al., 2018). Legislative efforts should also protect the rights of individuals with epilepsy and reduce systematic inequalities. 

Within healthcare systems, integrating epilepsy management into primary care is essential, particularly in low- and middle-income settings. This includes training non-specialist providers and ensuring that antiepileptic medications are affordable, accessible, and quality assured. Updating Essential Medicines Lists to include newer-generation treatments is also critical (Wilmshurst et al., 2018).

Prevention and research must be prioritised through improved obstetric and neonatal care, as well as increased investment in paediatric-focused research that considers cognitive and developmental outcomes alongside seizure control (Wilmshurst et al., 2018).

Addressing stigma remains central to effective advocacy. School-based education programmes and broader public awareness campaigns can improve understanding and reduce discrimination, particularly when supported by visible advocacy initiatives (Wilmshurst et al., 2018).

Finally, epilepsy care must adopt a family-centred approach. Routine psychosocial screening and targeted support systems that includes financial, educational, and psychological resources are essential to reduce caregiver burden and strengthen long-term outcomes (Al-Ghawanmeh et al., 2025; Khalili et al., 2025). 

Collectively, these policy priorities highlight that effective advocacy requires coordinated action across multiple levels of society.

Conclusion

Advocating for children with epilepsy requires moving beyond seizure management towards a holistic and sustained commitment to developmental well-being. Across infancy, childhood, and adolescence, the needs of children with epilepsy evolve, requiring advocacy efforts that are responsive, developmentally informed, and grounded in a rights-based framework.

The impact of epilepsy extends beyond the individual child, affecting families, schools, and communities where stigma and misunderstanding continue to shape lived experiences. Addressing these challenges requires integrated approaches that combine early diagnosis, educational support, mental health care, and structured transitions into adulthood.

Ultimately, effective advocacy involves reframing epilepsy from a purely clinical condition to a broader social and developmental concern. Through coordinated efforts across systems, it becomes possible to create environments in which children with epilepsy are not only supported in managing their condition but are also empowered to reach their full potential. It is through coordinated, rights-based action that children with epilepsy can be supported not only to manage their condition, but to meaningfully participate and thrive within their communities.

References

Al-Ghawanmeh, H., Al-Awamreh, K., Al-Dwaikat, T., & Rababa, M. (2025). Psychosocial burden and coping strategies among caregivers of children with epilepsy: A cross-sectional study. Epilepsy & Behavior, 150, 109–118. https://doi.org/10.1016/j.yebeh.2025.109118

Benn, E. K., Hauser, W. A., Shih, T., Leary, L., Dayan, D., & Hesdorffer, D. C. (2014). Diagnostic delays in children with early-onset epilepsy: Impact, reasons, and opportunities for improvement. Epilepsia, 55(2), 273–281. https://doi.org/10.1111/epi.12507

Biset, G., Abebaw, N., Gebeyehu, N. A., Estifanos, N., Birrie, E., & Tegegne, K. D. (2024). Prevalence, incidence, and trends of epilepsy among children and adolescents in Africa: A systematic review and meta-analysis. BMC Public Health, 24(1), 771. https://doi.org/10.1186/s12889-024-18236-z

Erasmus, S., van Eeden, R., & Ferns, I. (2022). Classroom factors that contribute to emotional intelligence in the primary school context. South African Journal of Childhood Education, 12(1), Article 1072. https://doi.org/10.4102/sajce.v12i1.1072

Ettinger, A. B., Wisniewski, T., & Islam, L. (2022). Psychiatric and psychosocial issues in adolescents with epilepsy. Epilepsy & Behavior, 134, 108841. https://doi.org/10.1016/j.yebeh.2022.108841

Geerlings, R. P. J., Aldenkamp, A. P., de Louw, A. J. A., & Gottmer-Welschen, L. M. M. (2021). Transition of care for adolescents with epilepsy: A systematic review. Seizure, 88, 78–88. https://doi.org/10.1016/j.seizure.2021.03.017

Khalili, M., Ahmadi, F., & Cheraghi, M. A. (2025). Family-centered care in pediatric epilepsy: A systematic review of support interventions and outcomes. Journal of Pediatric Nursing, 72, 45–53. https://doi.org/10.1016/j.pedn.2025.01.005

Khan, A., Al-Khateeb, M., Bashir, S., & Almubarak, L. (2020). Importance of prompt diagnosis in pediatric epilepsy outcomes. Seizure, 80, 209–213. https://doi.org/10.1016/j.seizure.2020.06.017

Mahr, F., Diehl, B., & Thompson, S. M. (2020). Epilepsy and eating disorders: A review of the literature and case reports of patients with comorbid binge-eating disorder and absence seizures. The Journal of Neuropsychiatry and Clinical Neurosciences, 32(1), 14–22. https://doi.org/10.1176/appi.neuropsych.19030037

Makhado, L., Davhana-Maselesele, M., & Netswera, F. G. (2024). Psychosocial challenges experienced by children living with epilepsy: A systematic review. Curationis, 47(1), e1–e9. https://doi.org/10.4102/curationis.v47i1.2423

Marini, I., Muneghina, M. B., Bonavita, A., Riccioni, R., Pasquini, M., & Piccardi, L. (2026). Unaware and unrestrained: Binge-eating behavior in epileptic absence seizures. Eating and Weight Disorders – Studies on Anorexia, Bulimia and Obesity, 31(1), Article 11. https://doi.org/10.1007/s40519-025-01811-7

Sekgobela, T. (2025). Bullying in an educational setting in Limpopo Province: Insights from the social work discipline. Social Work/Maatskaplike Werk, 61(3). https://doi.org/10.15270/61-3-1140

Singh, S. (2024). Promoting self-management in children with chronic conditions through play-based interventions. South African Journal of Childhood Education. https://sajce.co.za/index.php/sajce/rt/printerFriendly/1522/3044

Wilmshurst, J. M., Guekht, A., Secco, M., Cross, J. H., & Perucca, E. (2018). Advocacy for children with epilepsy: Leveraging the WHA resolution. Epilepsia Open, 3(2), 167–174. https://doi.org/10.1002/epi4.12220

World Health Organization. (2024). Epilepsy: A public health imperative. https://www.who.int/publications