Epigraph Vol. 24 Issue 4, Fall 2022

Nursing Section aims to meet nurses’ needs for epilepsy care worldwide

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By Nancy Volkers, ILAE communications officer

Cite this article: Volkers N. Nursing Section aims to meet nurses’ needs for epilepsy care worldwide. Epigraph. 2022;24(4):24-27.

Nurses are the most prevalent health care providers in the world; the World Health Organization estimates they make up 59% of all health care professionals.

ILAE Nursing Section logo

Nurses who care for people with epilepsy can fill dozens of roles, depending upon the nurse’s training and the facility and country in which they work. But nurses who care for people with epilepsy face many challenges, including a lack of educational opportunities, inadequate research funding, and limited understanding of their roles and value.

In fall 2021, the ILAE Nursing Section was formed to create a “home” for nurses around the world who care for people with epilepsy. The section will focus on nurses’ needs and determine how ILAE can help to meet them, as well as integrate nurses’ perspectives into other aspects of ILAE, including commissions, councils, and congresses.

The ILAE Nursing Section priorities

The Nursing Section’s first priority is collecting information through a needs assessment. “The goal of that is to get a sense of what kinds of nurses are out there, what are they doing, their work settings, their educational needs, and other needs,” said Patty Osborne Shafer, Nursing Section co-chair and epilepsy nurse specialist and consultant from Boston.

Headshot of Patty Osborne Shafer
Patty Osborne Shafer (USA)

The section leaders are anticipating wide variability in needs and barriers among nurses in different regions and hope to target each region with customized training and solutions. Given that 80% of people with epilepsy live in low- and middle-income countries, it’s crucial to understand the needs of nurses in those areas, said Jane von Gaudecker, Nursing Section co-chair and assistant professor at Indiana University School of Nursing.

“We know that there are no educational opportunities in those areas—not just for epilepsy but broader neurology training is not possible for nurses in many low- and middle-income regions,” she said.

Standardized education does not exist

The United Kingdom has developed competency frameworks for adult epilepsy specialty nurses (ESNs), pediatric ESNs, and learning disability ESNs. The American Association of Neurology Nurses has a certificate program. Nurses can get a master’s degree or a doctorate in preparation for an advanced practice role, such as a nurse practitioner, but there is no specialized credentialing for epilepsy nurse practitioners or other nurses who care for people with epilepsy.

Also in Epigraph: The value of epilepsy specialty nurses

Headshot of Karen Legg
Karen Legg (Canada)

“Nurses have to go through a formal educational process and credentialing to be able to say they are an advanced practice nurse—but how that relates to getting advanced epilepsy knowledge varies on your institution, your resources, and where you live,” said Shafer.  “We were trying to get a nursing certification for epilepsy in the United States, but certification bodies were telling us that there aren’t enough of us.”

“Most nurses who begin working in an epilepsy center or an epilepsy clinic learn from colleagues,” said Karen Legg, secretary of the Nursing Section and a recently retired epilepsy nurse practitioner from Nova Scotia. “We are self-directed and read everything we can get our hands on. We find the needs of the patient, and then learn how to meet those needs. But we are left to figure it out.”

Three levels of training

The ILAE Nursing Section is shaping educational curricula for three levels:

  • Nurses who are new to epilepsy
  • Nurses who may care for people with epilepsy on a regular basis, but who do not self-identify as “epilepsy nurses”
  • Nurses who specialize in caring for people with epilepsy (epilepsy specialty nurses, or ESNs)

“We’re focused on that first level right now, and data from the needs assessment will help us go further,” said Shafer.

Headshot of Jane von Gaudecker
Jane von Gaudecker (USA)

Though the burden of epilepsy is greater in low-and middle-income countries, there are fewer physicians to address it. “Nurses are the biggest segment of the health care task force,” said von Gaudecker, who also conducts research on global health. “So focusing on nurses in low- and middle-income countries, training them in how to care for people with epilepsy and how to identify a person with epilepsy in the community and refer them to care—that would be so important.”

Training for primary-care nurses could help them identify the signs and symptoms of epilepsy in their patients, as well as better understand treatment options for people with drug-resistant epilepsy, making nurses an active part of referring people to more specialized care.

“There are so many people with epilepsy, even in high-resource countries, who are not near a tertiary center or epilepsy center,” said Legg. “They may have ongoing seizures, but they just suffer along because the person caring for them says, ‘Yes, you have epilepsy and you’re going to have seizures now and then.’

“We know that doesn’t have to be the truth, and that there are more options. If we can reach nurses and raise that awareness, we can change people’s lives.”

Growing the ILAE Nursing Section

Membership in the Nursing Section has grown quickly; there were 250 members in mid-August 2022, and nearly 450 by the end of September 2022. The response has been a pleasant surprise, said Legg.

“People are not just joining and answering the membership questions – they’re sending notes asking how they can be involved,” she said. “There really is such a keen and vibrant response; it’s big, and it’s growing quickly.”

“It’s so rewarding and encouraging to see this,” said von Gaudecker. “Nurses are interested in being part of this global organization, getting to know each other and working together.”

Learn more about the ILAE Nursing Section

Join the ILAE Nursing Section

Read the ESPENTE study (2019)

Benefits of the ESN role, standardized practices and education around the world (2019 - Prevos-Morgant M et al, Revue Neurologique)

Nursing Section Goals

  • Needs assessment to understand what nurses who care for people with epilepsy want and need
  • Educational curricula for different levels of nursing, comparable to the ILAE epileptology curriculum – Levels 1, 2, and 3, basic through highly specialized
  • Integrating the participation of nurses on other ILAE councils, commissions and task forces that address issues important to nurses (i.e., global health)

Also in Epigraph: The value of epilepsy specialty nurses