Epigraph Vol. 24 Issue 4, Fall 2022
Nursing in epilepsy care: Roles, value, and the road ahead
Reported, edited and produced by Nancy Volkers, ILAE communications officer
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Nurses play crucial roles in epilepsy care, but their perspectives and voices are often missing. In 2021, ILAE created the Nursing Section as a “home” for all nurses around the world who care for people with epilepsy. Sharp Waves talked to three leaders about the challenges facing epilepsy nursing and the goals of the Nursing Section.
Thank you for joining me – could you please introduce yourselves?
Jane von Gaudecker, assistant professor at Indiana University School of Nursing, and I’m basically a global health researcher interested in treatment gap issues in LMIC.
I’m Patty Osborne Shafer, I’ve been in neuroscience nursing all of my life, and most of my career spent as a clinical nurse specialist at an epilepsy center in Boston. I now focus on health education for people and families with epilepsy, and HCPs.
My name is Karen Legg, and I’m an epilepsy nurse practitioner out of Halifax NS Canada. My focus and clinical care has been in epilepsy for my entire nurse practitioner career, and I did recently just retire from my position at the hospital, and have remained involved with epilepsy nursing groups, as the chair of the Canadian epilepsy nursing group and as a member and leader of the new ILAE Nursing section.
So I would love to hear about the Nursing Section, how it got started and then we can take it from there.
Karen Legg: Patty, you should run with that one.
Patty Osborne Shafer: Well I’ll start. Nurses have been involved in the care of people with epilepsy as long as epilepsy has been around, but it’s not been recognized as one of the important health care providers involved. So if you think about the care of people with epilepsy in specialized centers, you usually have multiple people, and it’s often led by a physician, but in reality, when you think about the needs of people with epilepsy, the nurse plays a central role. But in every country, it’s different, depending on the resources available to them and where they practice.
I like to think about nursing’s different from physician care in that you look at not just the disease or illness, but you look at the impact on the person’s health and daily life, and the impact of their daily life and health on the epilepsy. Even though nurses are different everywhere in the world, that’s the common thread that pulls us all together.
When we don’t have a professional society as a place to pull us together, it feels like, and we hear from our colleagues, that everybody’s kind of doing things a bit differently, nobody has a network or colleagues to kind of reach out to and work with and we’re all kind of starting all over again. So in some of the countries that we’re from, we’ve created nursing groups in our professional societies, and we were called by Dr. Sam Wiebe, as now past chair of ILAE, to pull together a task force of nurses to say what can we do to help nurses within ILAE.
And the first focus was on the education that nurses might need. That became such a big task, because you have nurses at all different levels and at all different settings. And we soon realized there’s a lot that ILAE could do to help nurses and improve the care of people with epilepsy.
So, last year we were given the opportunity to turn this into a section. So as kind of an independent group within ILAE, we could look at the broader needs of nurses, how can nurses help people with epilepsy by getting involved with ILAE and how can ILAE help nurses around the globe.
Karen, did you want to add to that?
Karen Legg: To grow it, it really was us contacting anybody we knew, whether that was physician or nurse or anyone in all of the ILAE regions trying to find someone who would agree to take on a leadership role in those regions and be a voice for nurses in those regions. And it’s a little more challenging than it is with the physician group and one of the reasons for that is the language difference, because physicians are educated and as part of their education they receive English language training. That doesn’t necessarily happen for nurses. So that became a challenge for us to find individuals who we could communicate easily with and who would be the voice for us.
Jane von Gaudecker: I also think it is not just representation or the leadership. Nurses are just interested in being part of this group. Like I think within the past three or four months that we’ve been working on reaching out to nurses… we are over 220 nurses.
That number was from August 2022. By late October, nearly 500 members had joined, from 58 countries.
Jane von Gaudecker: So that is big growth. This also shows how much nurses are interested in being part of this global organization and getting to know each other and working together. So people – nurses, whether they call themselves epilepsy nurses or not, they’re interested in being part of epilepsy care.
So there’s a needs assessment and a curriculum being developed. Patty, did you want to speak to those?
Patty Osborne Shafer: Well let me start with the curriculum because that’s where the task force led. Nurses are feeling like, asking each other, what do you have for an educational background, or do you have resources that can help me? In some countries, there have been some government sponsored or academic sponsored programs for epilepsy nurses. In other countries, you learn from experience or you have programs that were developed within your country but don’t necessarily resonate or easily transfer to other countries.
So that’s where we started, but what we found was before we really tried to finalize that, we really need to have a better idea of nurses directly in the field. With the process of developing the educational curricula, we had people involved from the whole globe, specifically on the educational part. But it was Dr. (Edward) Bertram and Dr. Wiebe who said to get an assessment out there to make sure you are capturing the priorities of nurses.
That’s where Jane was really instrumental in putting together a survey that’s going to be launched. The goal of that survey is to get a sense of what people are doing, what kinds of nurses are out there, what are they doing, what their setting is, what are their educational needs about what are some of those other needs.
So specific to the educational curricula, we’re looking at the needs for those nurses who are new to epilepsy, what’s that kind of minimum knowledge base that they need. Because they look at epilepsy or help people with epilepsy a bit differently than the way the physician colleagues do, or basic scientists. And then we’re looking at those nurses who care for people with epilepsy on a more regular basis but don’t consider themselves an epilepsy nurse. For example, a nurse at a hospital or a clinic, or neurology unit who deals with epilepsy but also lots of other things. And then the nurse who really specializes in epilepsy. They consider epilepsy as their predominant home, okay? So that’s what we’re coming back to try to finish up, particularly focusing on that first level, while we try to get data from the needs assessment to help us go further.
Jane, can you tell some about the needs assessment and how that’s going to help us?
Jane von Gaudecker: Sure. We will be targeting nurses caring for epilepsy worldwide, it’s not just specialized nurses. We will get some of the demographic information from the nurses – who they are, whether they are specialized nurses, what is their license, where do they work, and their role as a nurse caring for people with epilepsy. Are they involved in education, are they involved in doing things, for example prescribing medication, care of patients, post-surgery, pregnancy education, things like that. And what are the resources available in their country and what is needed. Other things like major barriers in their country, and finally we do want to know how ILAE can help these nurses.
Eighty percent of patients with epilepsy live in low- and middle-income countries. So it’s important for us to know, what are the barriers the nurses in those regions are facing. For example, we do know there are no educational opportunities, not just for epilepsy; neurology training itself is not possible for nurses in many African countries or other low- and middle-income countries. We anticipate that the needs or the barriers that they face in those countries to care for patients, for example, the educational needs might be completely different for those from Africa compared with those from Europe. We do expect a lot of educational needs, which can speak to our educational curricula. We are expecting these differences and we are hoping that we can target different regions to help them address the barriers they are facing.
Are there training programs or certifications available for epilepsy specialty nurses anywhere in the world?
Karen Legg: There really isn’t. The UK does I think have formal training programs available but I’m not sure they are mandatory. There are a lot of online things in the US, from [the American Academy of Neurology] and even from [the American Epilepsy Society], that are available but again, not listed as mandatory usually for most nurses entering epilepsy care, or dedicated epilepsy care in an institution. So there are things that are available but nothing formal.
In Canada there certainly isn’t. Most nurses who begin to work in an epilepsy center or an epilepsy clinic or just have a focus on epilepsy learn as Patty said, either from colleagues, whether they’re nursing colleagues or physician colleagues, and we learn as we go and do self-directed learning and read everything we can get our hands on. But we are left to figure it out. We find the needs of the patient and then we learn how to meet those needs.
Patty Osborne Shafer: So even in the UK where they have developed this specialized training, now parts of it are struggling with that because the funding for it is different now and they’re not getting nurses to be able to get the specialized training in epilepsy. In the US, we were trying to get a certification for epilepsy, but the certification bodies were saying, "Well, there’s not enough of you." Yes, we know epilepsy is important but to think of a specialization you have to think about the number of nurses who might go for that to make it worthy of their costs and effort.
I personally am not sure you could do an international certification thing because nursing is so different everywhere. But we can really try to up the level of education and look at what are those funding barriers to help nurses in different regions try to explore the opportunities.
So I really want to get at the diversity of roles and the value, and the underappreciated value.
Karen Legg: That came out in the forum, particularly.
The forum is a session at the European Epilepsy Congress in Geneva in July 2022. And it covered the roles and value of the epilepsy specialty nurse.
Karen Legg: What was very clear was nurses working in epilepsy felt very valued by their colleagues – so, the physicians, epileptologists that they worked with. But they do not feel valued by the institutions who control their work. That comes from that theme of nurses being pulled and sent to floors, being pulled out of their epilepsy practice and being sent to work somewhere else, and just the whole state of nursing right now, around the globe, but no, nurses absolutely gave that same impression that the individuals they work closest with understand their value to the practice and the patient, and support them, but they don’t work for that individual usually, they work for an institution who says, "Yes that’s nice, and now you will go over here and do what I need you to do."
Patty Osborne Shafer: Karen’s absolutely right on that part, and if you don’t have the institutional backing, that goes all the way from working conditions to salary, the whole gamut. Now if you take that up a notch to think about the value of nursing and the public perception, which also gets down to how people with epilepsy and families might see you, is that often times people think of well, the nurse is just there to support the physician or to support the other people. And there are certain nursing roles where that is what you do, a very important role. But I’m just going to take an example.
A person with epilepsy who goes to a program that has nurses and doctors and other people, they may well be doing things to help facilitate your diagnosis by trying to help gather information and teach you about your seizures and tracking your seizures and seeing how you respond to it. And you can have a medication prescribed by a physician for it. But if you send a patient home that way, by writing them a prescription and say, “Go home and take this two or three times a day and come back and see me in three or six months,” 9 times out of 10 that person is going to go home and say, “Why am I taking this?” And then they might have problems and not end up taking it.
No one’s addressed “What do I do if a seizure happens? What if I forget my medicine? What do I tell my family? What do I tell my friends? If I can’t drive, how do I get to work? If I’ve got a baby, is it safe for me to take care of a baby?”
So when you think about who does that, in many cases that’s the nurse, who looks at what’s going on in that person’s life and then saying, “Now what do you need to know about the epilepsy? How can I help you look at how your life might be affecting your epilepsy and how you might need to adjust it? If the epilepsy is preventing you from driving, what are the workarounds? How are you going to get to work and do all of these other things? How are you going to stay safe?” In that part, even though I’ve come from a pretty supportive institution where I work, that stuff isn’t valued the same.
And then I want to add one more and then throw this to Jane, and that’s that we have nurses doing great work in nursing research to kind of help us all do a better job. And that is so undervalued and underrecognized. Jane, can you give us an example of that?
Jane von Gaudecker: Well I would go back to funding. I could talk a lot about this, you know! For nurses to do any kind of research, the biggest barrier that we face is funding. You go to any organization, it is for physicians or clinicians, you know? It is never for nurses. I’ve been turned down so many times. It’s my personal story, butthat is the biggest, the thing that comes right in front of me when you talk about research, and the barriers that we face as nurses. It is a struggle. We are not many epilepsy nurse researchers in the country, and the barriers that we face, it is like getting nowhere.
So it’s sort of a catch-22. Obviously epilepsy specialty nurses have huge value toward patient care, patient outcomes, quality of life, all of the things that medicine is supposed to be doing for them, but there’s very little research that can show, numbers that say look, if you have an epilepsy specialty nurse, here’s what happens – these costs go down, and outcomes go up, and people are seizure free, because there’s no funding for that sort of research.
Jane von Gaudecker: No, there isn’t. Where do we go for funding? But I do want to go back to the value conversation we’ve been having but I want to talk about countries in Africa and other low- and middle-income areas. We do not know what nurses see themselves as. It would be so important and interesting to see how they see themselves. You and I know that until we feel valued, we don’t feel like doing something, going out of the box and doing something extra or you know. If we feel valued, we feel empowered to do things.
But if we look at the World Health Organization’s neurology workforce numbers, the number of physicians caring for patients are really less – it’s something like 1.4 per 100,000 population, compared to 7.1 in high-income countries. Nurses can play an important role in caring for patients with epilepsy and other neurological disease, but are they doing it? Are they feeling valued or empowered to do this? So this would be an important next step for us to hear, how do nurses in African regions value themselves. They are not epilepsy nurses, as we call ourselves here. They’re not specialist nurses. They’re just diploma-level nurses, caring for patients with epilepsy as they see any other patients. They probably don’t get any training, there’s a lot of hierarchical issues, bureaucracy there. So it would be really interesting to know how they value themselves and what ILAE can do to support them.
Patty Osborne Shafer: Because nurses are so prevalent, and I’m just talking nurses in general, they’re often one of the first people that a person comes into contact with at a community health center, in a school, and if they don’t know about epilepsy, they don’t think epilepsy is important or their role as a nurse or what can they do as a nurse, many of those people will not go on or get referred for further care. So part of the importance we see is nurses as part of the health care work force, is that if you can improve the education, the sense of value of them as part of the key care for people with epilepsy, we can help improve the access to care for people with epilepsy.
Jane, when you were talking, I was thinking about the first podcast episode we released was on the neurology training program in Zambia, which I think is in its fourth year now, training clinicians. But before that, there were no neurologists in the entire country. So who is caring for the people who have epilepsy? It’s not specialists, because they don’t have any.
Jane von Gaudecker: Right.
So it must be, it is, nurses and community health workers, traditional healers, all of these other groups.
Jane von Gaudecker: And as Patty said, among health care professionals, nurses are the biggest health care task force. So focusing on nurses in these low- and middle-income countries, to train them how to care for people with epilepsy, how to even identify a person with epilepsy in the community and then refer them – that would be so important.
Patty Osborne Shafer: We know that the sooner someone can get diagnosed and start treatment, the better chance that that medication is going to work, that they could become seizure free. Well, you know, I think of, in the United States we’re pushing to get earlier treatment and people at least have access to something. But if we’re talking in some of the real resource-limited countries, their access might be to just one medication, which may or may not be appropriate for their type, and it’s still going to take delays to try to get to a specialist, so we’ve got to get people to some basic level of care as fast as we can if we want to give them some hope of finding the specialized care and better outcomes.
Karen Legg: You know, if nurses working in primary care offices in remote communities are even aware of the process of what exists for individuals who have ongoing seizures or medically refractory epilepsy or poorly controlled epilepsy, they can bring it up not only with the patient but with the physician group they work with, to say, "Maybe we should be sending this patient on."
There are buckets and buckets of patients with epilepsy who are around even in high-resource countries, in remote communities not near a tertiary center or an epilepsy center. They have ongoing seizures, are at risk of death and SUDEP, and they just suffer along because the person caring for them says, “Yeah it’s epilepsy; you’re going to have seizures every now and then.” And we know that doesn’t have to be the truth and there are more options.
The more nurses that have awareness, even as Jane said, they may not be epilepsy specialist nurses, but if we can reach nurses and raise that awareness, we can change lives for those people.
I wanted to hear from each of you examples of the value that epilepsy specialty nurses add.
Karen Legg: In particular when we look at nurses who are more specialized in epilepsy and practice in environments where they do specialized epilepsy care – that could be an RN who works in a clinic, a nurse practitioner who has a practice in an epilepsy center, anywhere in between, telephone practice for most nurses is a massive part of their practice. And when patients leave our clinic, they leave with the nurses’ phone number and with the understanding that if they have any questions, issues, breakthrough seizures, side effects, issues with their job, issues with their spouse, whatever it is, they can call and it will either be handled by the nurse on the other end of the phone or that nurse will make sure they are linked with the neuropsychologist, the social worker, anything.
Patients call for all of those reasons. They call when they have a side effect. Or they picked up their prescription at the pharmacy and something the pharmacist said scared them and they’re not going to take the drug. Then you reiterate the value of taking the medication, you talk about the side effects, you talk about how they’re not marrying the drug, they’re going to try this one and we’ll see how it works for them. And if it’s not the right one for them, then we get them back and we make a change, or we make a change over the phone, without making them drive 2 ½ hours to the epilepsy center.
And if that nurse wasn’t there, that wouldn’t happen. Then they would have to go see their family doctor, who wouldn’t necessarily understand what to do next with the medication – do you lower it, do you change it. And it requires a new referral, or a phone call and a wait for how many months, and then you’re in the emergency department because you didn’t like the drug and you didn’t take the drug and you had more seizures.
So nurses intervene at so many levels. When someone calls in and their family doesn’t understand their seizures, so you do a group zoom or a group phone call or if they’re close enough, you bring them all in and you say okay, let’s talk about what epilepsy is. And you teach them.
Jane von Gaudecker: I want to bring a slightly different perspective. I’m originally from India. I worked as a nurse in India and in the United States. Things may have changed in India, but 17 years ago when I came to the United States, I want to say that I was really excited about the value an RN had in the United States, compared to what I’d seen in India. I kind of knew that my patients respected or valued my opinion – it made me a more responsible person. You talk to your patients about each and every aspect of their disease, about the process of treatment, what they need to do, and they listen to you. So I think that the place that you’re in, the institution you’re in, also matters.
Patty Osborne Shafer: In our chances to talk with patients and families about these broader issues, we learn about other health problems. We know that for people with epilepsy, the risks of depression are higher than in people without epilepsy, and in those with uncontrolled epilepsy, that can be as high as like 50%. Depends on the sample you’re looking at and where. Butif you can identify those risks or symptoms of depression, and get that treated, how does that improve quality of life? So we’re looking at managing the epilepsy but looking at those other health problems and risk factors and when you put all of that together, I think about all of that in terms of quality of life, and they’re all health outcomes, so it’s a broader view.
Karen Legg: The practice, you know, there are tons of wonderful neurologists or epileptologists who do take that time or have a practice that permits that time, or work by themselves and don’t have someone who can take on that role. But in areas where there is nursing, it’s often the nurse who takes on that role and then the physician can focus on things like diagnosis and prescribing and testing and those kinds of things, and the nurse can take on that teaching role and be that contact person.
You’ve said that neurologists and epileptologists understand the value of nursing in epilepsy care. What can they do in real life to support you?
Karen Legg: That’s a big question, a very big question, and I think one of the biggest things they can do, and do do and need to do more of, is advocate for the nurse in their area or advocate to get a nurse in their area working with people with epilepsy. When I say advocate, I mean at an administrative level. Most of the nursing positions created, and even this nursing section, didn’t happen without the support of a physician who was interested in making it happen.
It’s not that we don’t exist without them, but certainly their voice is valued. If they go to administration when administration is trying to close [epilepsy monitoring units] because of staffing or pull nurses out of epilepsy clinics because of staff issues or other issues and they say, “No, you can’t, this is why,” and can articulate the value-add to the patient and to patient outcome, then it is less likely to happen that someone who goes, “Oh, the hospital said you have to go, so you have to go.”
Other little things – when I came up through, the head of the division of neurology gave us as nurse practitioners, the division gave us a Christmas gift. When the division chief changed, all of a sudden, we were getting things like a voucher from the division to say we’re going to cover your registration at an international meeting, or we’ll cover your accommodation at an international meeting. Instead of, you know, a box of candy or something like that. It was something that said, “We’re investing in you.”
We have to organize ourselves and we have to support nurses to help them figure out how they can measure some outcomes to speak in the same language that the administrators speak in and hear in. What is it that you do that makes a difference?
Jane von Gaudecker: I think that ILAE is truly supporting, our physician colleagues are truly supporting us nurses. The reason the Nursing Section has come to fruition itself is support from physician colleagues. I do think we’re getting support from ILAE – let’s hope this grows, and everywhere in the world, we get friends.
To join the Nursing Section, visit ilae.org/nursing. That’s ilae.org/nursing.
Nurse-led care for epilepsy at the primary level in a rural health district in Cameroon (2008 - Kengne AP et al., Epilepsia)
Patients with epilepsy care experiences: Comparison between services with and without an epilepsy specialist nurse (2018 - Higgins A et al., Epilepsy & Behavior)
Epilepsy Specialist Nurses: The Evidence (the ESPENTE study) (2019 - Campbell F et al.)
Benefits of the epilepsy specialty nurse role, standardized practices and education around the world (2019 - Prevos-Morgant M et al, Revue Neurologique)
A 2022 report by Epilepsy Consortium Scotland that highlights the importance of epilepsy nurse services during the pandemic
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