NLN Nursing EDge Unscripted
The NLN Nursing EDge Unscripted podcast, brought to you by the National League for Nursing Center for Innovation in Education Excellence, offers episodes on the how-to of innovation and transformation in nursing education. Each conversation embraces the power of innovation to inspire educators and propel nursing education forward.
NLN Nursing EDge Unscripted
From Awareness to Action: Preparing Nurses to Serve People with Disabilities
This episode of Nursing EDge Unscripted explores how nursing education can better prepare students to care for individuals with intellectual and developmental disabilities (IDD). Dr. Suzanne Smeltzer and Ms. Colleen Meakim discuss the significant gaps in nursing curricula and emphasize the importance of integrating IDD content throughout undergraduate and graduate programs. They highlight practical tools such as the IDD Toolkit and ACE scenarios, which offer faculty guidance and simulation resources to enhance student learning. The conversation also addresses ableism in healthcare and the need for person-centered care that respects the lived experiences of individuals with IDD. Finally, the guests advocate for universal design and inclusive practices to support both patients and nursing students with disabilities.
Additional Resources
Advancing Care Excellence for Persons with Disabilities
Inclusion of Disability in Nursing Education: Rationale and Guidelines
ACE.D Unfolding Cases: Mary Lou & Rob Brady and Patrick and Gloria Lake
ACE.D Teaching Strategies on Communication and Care Management for People with Intellectual and/or Developmental Disability: Sandy Case Study and Jason Case Study
Smeltzer, S. C., Dolen, M. A., Robinson-Smith, G., & Zimmerman, V. (2005). Integration of disability-related content in nursing curricula. Nursing education perspectives, 26(4), 210–216.
Dedicated to excellence in nursing, the National League for Nursing is the leading organization for nurse faculty and leaders in nursing education. Find past episodes of the NLN Nursing EDge podcast online. Get instant updates by following the NLN on LinkedIn, Facebook, Instagram, Bluesky, and YouTube. For more information, visit NLN.org.
Welcome everyone to another episode of the NLN podcast, Nursing Edge Unscripted. I am your host today, Dr. Kellie Bryant, and I'm here with my co-host, Dr. Raquel Bertiz, and we're both from the National League for Nursing. In this episode, we will explore how nursing education can better prepare future nurses to care for individuals with intellectual and developmental disabilities through conversations with our guests who are leading experts in the field. We will highlight current gaps, introduce practical tools like the IDD toolkit that is currently available and our ACE.D modules, and share other strategies for integrating these essential content into our nursing curricula. Our goal is to inspire educators to take action and advance equitable, inclusive care for all patients. Before we dive into the full conversation, let's share some of our reflections right after the taping. So, Raquel, that that was that was an enlightening podcast. I learned so much from Colleen and Suzanne. Especially, I love the part where they talked about how important it is to include the people with intellectual developmental disabilities into the conversation into the talk about their care. And I love also the fact that they have simulations at Villanova where they also use people that actually have these intellectual and developmental disabilities and have the students interact with these individuals. So, those were kind of the highlights that I got from the podcast. What about you? I agree. agree with you there. It's really definitely something that stimulated my imagination to kind of like think of oh how can we develop simulation scenarios out of the this conversations and then also the idea of having people with different disabilities, intellectual disabilities within that simulation scenario itself. That was very interesting to me. And the other thing that kind of like caught my attention was the word ableism. And I think that's something that we really have to understand as nurses and health care workers and even educators and how does that kind of like play into how we do or function in our roles. But the good news is we have the tools. We have the toolkit and also the ACE.D scenarios that they developed that can be used especially for educators who you know they need to somewhere to start or they're not sure how to embed it into the curriculum. So I think that's a great starting base. So I'm glad to hear about how that was created and what the components are of those toolkits that can help in making sure that you know that all of us are are teaching this content, right? And the great news is those resources are right here in the NLN website and yeah definitely tuning into this podcast will walk them through how these resources are used and even the links themselves would be in this episode as well. Yeah, great episode. Let's turn from our reflections to the experts driving this important conversation. Our guest today is Dr. Suzanne Smeltzer who is professor emerita from Villanova University Fitzpatrick College of Nursing formerly inaugural Richard and Marianne Kreider endowed professor in nursing for vulnerable populations and we are also here with Colleen Meakim who was a former director of the second degree track at Villanova University Fitzpatrick College of Nursing. So, I want to welcome both Suzanne and Colleen. Thank you for joining us today. Delighted to be here. All right. So, we're going to start with our first question. We want to talk about the big picture. Why is this important to focus on individuals with intellectual and developmental disabilities and have this in our nursing education today? It's actually quite crucial. One of the reasons is that the number of people with disability in general and IDD specifically it's a large and growing population both of them are and individuals with disability do not receive equitable health care they have health disparities and the health care that they receive across the board is often lacking and so there is quite a need for addressing the topic of disability And it's not just in nursing education, it's the other health care professions as well. We of course are focused on nursing education. We're focused on nursing students, nursing faculty as well as nurses in practice. The issues however are the same and those issues are lack of adequate education about IDD and the health issues they experience and the need for strategies to ensure quality health care for this population. You know, I just want to take us back and I probably should have started with this question. I've had the assumption that everybody understands what IDD is. So, can you take us back and define what that is and what would be some of those diagnosis that would be under, you know, having an intellectual disability? Okay, that's that really is an important question, Helen. Intellectual and developmental disability can be defined and has been defined as a lifelong developmental disability that affects intellectual or cognitive function. Now that's talking specifically about intellectual not intellectual and developmental disabilities. Developmental disabilities is really a broader term you know so there can be somebody who has as a very young child has been diagnosed with cerebral palsy that individual's intellectual abilities may be genius level but physically the person is unable to do certain activities because of the effects of cerebral palsy. If we're talking about intellectual disabilities, we're talking about issues that affect intellectual or cognitive function. You know, for example, learning, problem solving, reasoning, and adapting functioning. Interestingly enough, and this is something that I guess I was unaware of and I think many people are unaware of is that about 85% of people with intellectual disability have mild mild you know, cognitive impairment. Most of us think if somebody's got an intellectual disability, you know, these are people who, you know, can barely even turn themselves over in bed. Not so. Most people are able to work, have families, and, you know, if they're given appropriate supports are able to do very, very well. And again, that's information that most of us don't know, you know, and I think that's another example of something that's really really important for us to consider. Thank you. I think it's important to define you know the term first. You said there's a gap in our curricula which I definitely agree. I remember getting maybe a little piece in pediatric but definitely not enough. So where do you find that this content would fit? And we're not just talking about pre-licensure but also across in our APRN programs. That that's really a very interesting question and I would say it fits anywhere and everywhere. And let me give you a couple of examples of that. You know, you just mentioned, Kellie, that when you went to school, you remember some pediatric content probably related to IDD. And that's not uncommon, but it tends to be relatively short, relatively focused. And if you think about people with IDD, they grow up to be adults and we don't follow them through adulthood in terms of what the health care issues are of them as they go forward. The other thing about disability in general, but again IDD specifically is you can integrate it as I said anywhere and everywhere. Let me give you a couple of examples. If you think about the units where you know nursing students learn about pre-operative and post-operative care you know for patients undergoing surgery and if you add to that the element of here's an individual with IDD facing surgery you know may have some issues in terms of you know the the noise level or you know not knowing exactly what's going on not being told directly what's happening you know and that's a very potentially very traumatic experience for somebody with disability. So that's just one example and there are many others. So as I say literally it can be placed anywhere and everywhere. One of the things that we do at Villanova, and we've been doing this for years, in the very early part of the undergraduate students curriculum, there is communication and I think that exists almost every school of nursing across the country. In that section on communication, we start there in terms of how to communicate with individuals with disability because that's where it starts. That's just one example. Yeah, that's a very interesting perspective right there, Suzanne. And so I would like to kind of like further explore other than communication and you also mentioned caring for our patients in the OR. What would be important to understand? I mean what content if you will are important in both graduate and undergraduate curricula? I'm going to answer that question. So for both undergraduate and advanced practice RN programs, both the NLN and the AACN state that care must be person centered and that focus then should be demonstrating respect for diversity, differences, preferences, values, needs, resources, and the determinants of health that are unique to each individual. and also that the person should be a full partner and a source of information in this team-based care. Also person-centered care requires the intentional presence of the nurse who is seeking to understand the individual's lived experience and their connections with others including family, significant others, and their community. And so to that end, persons with IDD are the same as anybody else. Then they're individuals. they have unique needs, desires, preferences. And we as nurses need to understand that and work with them accordingly. The other key piece is the effective communication. That is that is something that's covered in every curriculum and it includes specific strategies that should be used when communicating with people with IDD. So, an example of a common problem that can arise is the nurse or the other health care provider will come into the room or space where the person is and often speak to the caregiver or the person that is accompanying the person with IDD rather than speaking directly to the person who has IDD. And so we believe that this lack of knowledge on the part of nurses and other health care providers leads to a lack of comfort and a lack of confidence on their part and therefore often ableism and negative attitudes and then that results in poor health care. So students one other thing that we feel students should understand about is a model of disability and there are models other than the medical model and there are two that we believe are more well-rounded in the approach of caring for people with disabilities and that would be the social model and the biopsychosocial model of disability and there is a component on the website in which these models are discussed and addressed. So people could go and use that as a reference source. Thank you. So we may hear from faculty that say I understand this is important. I understand that this needs to be threaded throughout the curriculum but I don't know how to how to do it. So can you tell us a little bit about the toolkit, IDD toolkit, and the ACE.D scenarios that you were instrumental in teaming up with the NLN and creating? How can faculty utilize these tools? Sure. Yeah. You know, I think a major issue and we've alluded to it already is the fact that many of us, myself included, when we went through nursing education programs, we didn't have that content. And so, you know, faculty are hesitant, you know, reluctant to address a topic that they don't know a whole lot about. The first thing I think is to you know go into the NLN website and look at the materials that are there. Read the materials that are there in order to get some basic education and preparation in order to then use modules as a stepping off point in order to teach students. One of the things that's on the website is a how to. There's two toolkits. One of them has to do with IDD and the other one is a toolkit which talks about integrating disability content in nursing education. You know, so there are two sources of attempting to do this. One of the things that we recommend is going into the website and start with reading what the you know reading what's in those modules. The modules include materials, resources, and teaching strategies for nursing faculty as well as faculty from the other healthcare disciplines that can be used in multiple ways. You know, for example, faculty could assign students to the materials and then ideally discuss those materials with them afterwards. Not just have the students read them on their own and say, "Okay, now they have the content, but then to discuss them afterwards." The materials can lead to the development and implementation of simulations. One of the things that we've done at Villanova, we actually now are approaching in the spring semester, there will be two different types of simulations. One is a virtual simulation which I'll talk about in just a second and then there's a simulation that will be done with graduate students starting this spring. the virtual simulation stimulated us to develop the materials that are now up on the NLN website. Villanova is one of five universities that's part of a grant and all the other universities involved in this grant sit on academic health centers campuses and so if they want to do some interprofessional work they just have to go downstairs walk outside go to the building next door and they have a group of students from other healthcare disciplines. Villanova is not that way. Villanova's College of Nursing is the only health profession on campus. And so as part of this grant, we needed to develop a method in which we can address the topic of intellectual and developmental disabilities and do it using, you know, the interprofessional team. And so that's what we've done. um you know is implement this virtual simulation, interprofessional simulation with other health care disciplines from a college down the road and with in individuals with IDD participating virtually but participating in the simulation which is critically important you know for them to have an active role in it because that's that's what this is all about. So the modules address things like communication you know some of the consequences of you know lack of knowledge colleague mentioned these ableism you know lack of you know lack of ability to communicate appropriately things of that sort. We also have as part of the IDD materials we have IDD what it is and IDD specific health issues you know that are common in individuals with ID. You know that as health care professionals all of us need to know about. There are also case studies you know that the students use with a faculty facilitator. We do a two-hour simulation. We've had a number of students from not just nursing but OT, PT, PA programs and pharmacy go through this virtual simulation. That's one approach. Yeah, that's that's a great amount of information there, if you will. As a faculty member, I usually kind of like get excited about resources and toolkits that I have at my disposal as faculty. So, and we acknowledge the value of this particular toolkit and why it's needed. But my question is for faculty who would like to start, what are the first steps? Colleen, do you want to do that or you want me to? I'll start. I think as Suzanne mentioned, the probably the first step is to go in and just read what's available. There are a variety of resources available that give you background information that help you to become knowledgeable very easily because the resources are right there for you and all the research has already been done and it's all incorporated into several documents that are noted. And now the newest thing will be the toolkit which will be very helpful to give some guidance to how to use these resources. Suzanne. Yeah. The only thing I would add is that faculty do not have to, you know, reinvent the wheel, right? The wheel's been developed and created for them. you know, they can take the materials. They don't have to, you know, do it in lock step, but, you know, there are materials that they can adapt and use in their curriculum in order to make sure that when their undergraduate students graduate from their undergraduate program, they know something about IDD and disability in general because very often that is not happening. And more often than not, that is not happening. And for me the question was we have a lot of our nursing students themselves who do have intellectual disabilities and we always kind of like had a back and forth with that amongst faculty how do we deal with this right so and that I have not found like a toolkit like this and I was just like can we find that toolkit too just for how to deal with our own students yeah you know that's interesting that you asked that question. There's a process right now going on to develop a vision statement related to disability. There are two chairs or co-chairs. I'm one of the co-chairs and the section that I'm addressing has to do with the curriculum, the kinds of stuff we're talking about today. And the other part of this is chaired by Beth Marx. And that's going to be or yeah it's going to be and it will be addressing students with disabilities you know how we how we recruit them how we accommodate them how we keep them and how we make sure that they are successful you know through the program into you know the workplace and hopefully with the workplace that is better accommodating you know than the current workplaces. So that is something that is coming in the in the future. I just want to add that, you know, having had a lot of students in my career that did have disabilities, I always say we have departments within our university. So, I think that's the first go-to is refer your students to those department so they can have the evaluation and then that department can see what accommodations are needed for the students. I think that's so important. That's that's for students who disclose. Yeah. Because there are students who are afraid to disclose. That's a good point. Yeah. And we need nurses and we don't need to discourage people. And you'd be surprised, you know, what people can accomplish with their certain disabilities. And so it's not up to us to make that judgment call. That's why we have experts. And also that's why it's important for us to allow for, you know, to have accommodations. Yeah. I think sometimes, you know, some people come up with the the excuse, you know, faculty, well, they're not going to be able to work in an ICU. Well, maybe they don't want to work at an ICU. That's not part of what their future is. And you know, you've got a sim lab and you can accomplish a lot of things in the sim lab in order to determine whether somebody can take a blood pressure appropriately. They don't have to be in an ICU to do that, you know. So, we need to look at alternative resources. And, and to me, it brings it back to the conversation of equity in in nursing education. And, you're right. A lot of times we sort of like use this knowledge to keep out certain demographics in nursing. But yeah, it's it's really important just like any kind of diversity to have all sorts of disabilities in the nursing profession as well. I think it increases the empathy if you will about what people are experiencing out there. Right. Right. Absolutely. So, what is your message to nursing programs that want to do better in preparing students for taking care of people with intellectual disabilities? What would be like your take-home, you know, tip that you would have a pearl of wisdom for these schools? I think Colleen said it, which is to begin with the modules. The first thing though is you know to get people to understand that they need to go find something in order to you know integrate disability in the curriculum. One of the things that is growing I think in you know sort of across the discipline and across health care professionals is the realization there is this growing group of people with disability. again it's a large group and actually people with disability are considered the largest marginalized group in the country you know so this is important I think another issue is that in terms of disability in general not IDD specifically but disability in general it has been said that disability is a universal experience that will affect every one of us at some time in our lives and that means to me that we need to make sure that health care professionals, including nurses, know how to give proper good care to individuals with disabilities. And that may be a selfish reason, you know, for, you know, for saying I need to make sure that my students know how to care for people with disabilities, but you know what? I'll take it. If that's if that's the primary or the only reason that somebody's doing it, I'll take that. But I think as time goes by I hope that you know there will be an increasing awareness of the need to address the topic of disability in nursing curricula. I have been at this for probably 30 years you know trying to address the topic we do it at Villanova. It does happen occur it does happen and occur in a number of schools but not universally and it needs to be universal. It needs to be for everyone, all students, undergraduate and graduate students. I think the other the other key piece that's really helpful is that there there are two extended case studies available on the website for people with disabilities and then there are two brief case studies for the people with IDD and each of those addresses a different age group and a different population and setting which I think is really helpful for faculty to be able to pick and choose where they want to put these resources in their curriculum. What do you find are the biggest mistakes that nurse educators or nursing programs make around this content in regards to how we view people with intellectual and developmental disabilities or how we teach the content or just the misconceptions about people that have IDD? I think the biggest the biggest misperception I think is that it's it's not that important. In 2005 I published the results of a study in which we surveyed nursing deans and directors who asked their faculty members about do we include disability and some of the reasons that people said that they did not include disability in their curriculum were they never thought of it. They never thought of it before. Now that's encouraging because that that means now that they thought about it maybe they will do it. The ones that were not encouraging were these answers. It's not tested on NCLEX. Oh, therefore, we don't teach it. That's very discouraging. That means we got to do something about NCLEX. The other one was it's not very important. Again, this is the largest group of marginalized people in the country. That makes it important. And that everybody in all likelihood will have a disability at some time in their lives. that makes this important, you know. So, for me, those are some of the major issues. People thinking it's it's not worth doing, it's not important, or they'll say that somebody else is doing that. Well, somebody else isn't doing it, you know. So that's that's one of the reasons I think it's so important to integrate it throughout the curriculum, not just a one-shot deal. So any last thoughts or anything you'd like to add as we close out this podcast that you'd like to share with our audience? I'll start with you, Colleen. Well, having been a simulation director prior to my role as the director of the second degree track, having those resources available on the web are is such a major and wonderful thing. I started in the day when there were no resources available and we were creating our own scenarios. So having tools such as that will make the job much easier for faculty. So I hope that people will take advantage of the resources available. I hope so too. And Suzanne, yeah, building on what Colleen just said, you know, I think the issue in terms of simulation is a really important one in the area of disability. You know, we at Villanova, we have had standardized patients with disability, you know, not actors, but people who have actual disability who have enriched the program so in so many ways. And also you know in the virtual simulation that I mentioned before the individuals who have participated in that online have been individuals with intellectual and developmental disabilities not people pretending to have one an actual disability and that's a really important point I think to take home. I agree that you know it's nothing like having the actual individuals there so the students can interact understand a little bit more about their lived experience and hopefully that will result in more compassionate care. So as we end I just want to say thank you to both you and Colleen for being with us here today to talk about this very important issue. So, and thank all of you for joining us for another episode of the NLN Nursing EDge Unscripted, brought to you by the National League for Nursing. We appreciate your support and look forward to continuing the conversation in our next episode. Thank you for joining us.