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 epilepsy^7,8 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 education. They may work in the community or in hospital outpatient and inpatient settings. Clinical responsibilities may extend to drug studies, ketogenic diet programs, and vagus nerve stimulator clinics. ENSs with advanced degrees can diagnose and prescribe either as independent nonmedical prescribers or under a physician’s supervision.

In the United Kingdom, National Institute of Clinical Excellence guidelines (NICE 2012) exist for the delivery of epilepsy services. This document provides a government framework for how nationally funded health services in epilepsy should be organized and delivered. Nursing care in the United Kingdom is organized into primary, secondary, and tertiary/quaternary care.¹⁰ There are a plethora of epilepsy nursing titles and roles but broadly speaking, nurses who provide support to families with children with epilepsy in primary, secondary and tertiary/quaternary health care are referred to as ENSs.

In 2005, the Royal College of Nursing, United Kingdom produced a competency framework and guidance for pediatric ENS services.¹¹ This document defines the ENS role and outlines competencies required to progress from novice (in the specialty), to competent and onto expert (advanced) practitioner. ENSs are senior registered nurses with a first degree, who have or are working toward a Masters in Science in Epileptology, with clinical experience in epilepsy, acute neurology, and community nursing.¹¹ A summary of the ENS role in the United Kingdom is outlined in Table 54–2.

Nurses have a key role in the care of patients with chronic health problems. Managing medical illness involves more than managing medical problems. It entails managing psychological and social issues including helping patients develop strategies to adapt to their illness and alter their lifestyles. In pediatric epilepsy, the nurse is in a unique situation to be able to help the child and family cope with all aspects of the disorder. They can educate the family regarding the pathophysiology of seizures, treatment options, and medication side effects. Nurses can alleviate fears surrounding seizures by teaching parents and caretakers what to do during a seizure. They can also support families to cope with the complicated and devastating challenges of epilepsy.

Buelow (2006) looked at stressors of parents of children with epilepsy and intellectual disability. She identified five categories/sources of stress, namely: concern about the child; communication with health care providers; interactions with the school; and support in the community. She found that families rarely discuss all their problems with their physicians. She concluded that an important step in helping parents is to assess stressor and psychosocial care needs. As many stressors arise from a child’s medical condition, nurses are in a unique position to help parents address these sources. Buelow suggests a list of potential parental stressors (Table 54–3). She argues that strategies for assisting parents should include assessing the problem, educating when appropriate, and referring to other professionals when necessary.