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Epilepsy is often perceived as a frightening and stigmatizing disorder and its impact can be enormous. Some children outgrow their seizures, others achieve good seizure control, and some become refractory to medical treatment. Epilepsy often coexists with cognitive and behavioral problems.1,2,3,4,5,6 Santilli (1993) describes the psychosocial factors as the spectrum of epilepsy7,8 highlighting that while some children may have an uncomplicated course others are compromised or devastated by seizures (Table 54–1).


By adopting the role of patient advocate, educator, and counselor, epilepsy nurse specialists (ENSs) are able to develop a therapeutic relationship with patients to empower them to manage their epilepsy. Children and families often seek information to help them understand the condition. Providing information is not a one-way didactic process. Parents of children with epilepsy need the opportunity and time to ask questions and raise issues of concern, which due to time constraints, doctors may sometimes find difficult to provide. By providing good quality relevant information nurses can help families gain a greater sense of control, which is necessary for self-management and optimal quality of life (QOL). In the hospital, clinic, or community setting, nurses facilitate a close liaison with other professionals and coordinate the multidisciplinary service needed for children with epilepsy. The proactive and complementary role of the nurse specialist will minimize fragmented care and bring an integrated approach to the complex management of epilepsy patients.9


How nurses become specialized and what role they have in the management of patients with epilepsy varies from country to country. There are no formal boards that certify nurses as epilepsy specialists. Their specialization comes from clinical experience and continuing ...

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