In 1999, when my son was less than 2 years old, he was diagnosed with mitochondrial myopathy, an incurable disease that very few pediatricians knew how to treat, let alone heard of. The predicted maximum lifespan for those with this disease at the time was late teens or early twenties. According to Joanne Siegel, M.S.W., Principal Associate in the Department of Pediatrics of Albert Einstein College of Medicine, the life expectancy of the general population has increased by about 30 percent over the past 80 years, while the life expectancy of people with intellectual disabilities has increased by 200 percent during the same time period.¹  Over the past 22 years, medical breakthroughs in research combined, with trial and error in practice, has led my son to where he is now, i.e., about to turn 22. As an adult living with intellectual and physical disabilities, he currently has no choice but to provide his own, moment-of-need, training to medical professionals in whose hands his life is placed. He is expected to do this even though he cannot walk, cannot talk, and cannot move his own wheelchair.  He is also blind.

     Historically, when children living in the United States reach their 21^st birthday, they must shift from receiving their medical care in the pediatric healthcare system to receiving their care from doctors and other providers in the adult healthcare system. Children with developmental disabilities who, along with their caregivers, have provided a substantial source of training for providers in the pediatric healthcare system, must now start over and begin training new medical professionals in the adult healthcare system. They must also learn to navigate new hospitals, new insurance company procedures, and different public health programs that primarily serve adults. This can be a daunting task, especially for their caregivers who, after 21 years of caregiving and advocacy, are exhausted. Luckily, society is waking up to the fact that loving and committed caregivers coupled with the empathy of the world of pediatric healthcare has resulted in multitudes of people with developmental disabilities and differences living to become adults and entering the adult healthcare system. Relying on each patient to be his/her own trainer of healthcare workers is not a viable option. Thus, the journey has begun into the abyss of training healthcare students and existing healthcare practitioners in the care and treatment of this special population of human beings, and a vast array of training solutions are being examined and developed.

Historical Perspective

     In an interview on Beyond the Data (October 2019)², Special Olympics Chairman Timothy Shriver said that “people with intellectual differences deserve the same healthcare as everyone else.”   He noted that the greatest shift that he had seen since the time he was growing up to now is seeing people with intellectual disabilities as people with intellectual differences. He said that “[w]e have a long way to go in public health, but I think we have started the journey in the right direction. Liz Weintraub, the Senior Advocacy Specialist for the Association of University Centers on Disabilities (AUCD), added that it is important that people believe in people with differences. Dr. Shriver agreed, saying that “we need public health institutions…to believe in people with intellectual differences….If we really believed in them, we’d understand their health conditions. We’d study the data. We’d understand the data of health and wellness, as well as the data of disease and pathology.” He continued by saying that “[i]f people believed in people with intellectual differences, we would train every healthcare provider in how to care for them, in how to listen to them, in how to see them as human beings.”² In essence, Dr. Shriver was saying that, if those charged with providing healthcare for adult patients had empathy toward the plight of adults with disabilities, then the training of how to care for them would be very doable.

      Teaching empathy to healthcare students and practitioners has long been recognized as an important component of education and training. “Empathy, the most important human attribute that matters in every aspect of life, is essential in health care. Provision of patient-centered care requires empathic health care practitioners. The correlation between empathy of healthcare providers and improved patient adherence, satisfaction, and treatment outcomes is well-established. Scholarly evidence shows positive correlations between empathy and affective domains and confirms that soft skills are grounded in empathy.”³

     In order to encourage healthcare professionals to be empathetic towards their patients, simulation activities have been included in the healthcare education curriculum. Simulation is a “generic term that refers to an artificial representation of a real world process to achieve educational goals through experiential learning.”⁴ Simulation in the arena of medical education is “any educational activity that utilizes simulation aides to replicate clinical scenarios.”^{4  “}The inclusion of simulation and role play as an affective learning activity in health professions education is based on the rationale that affect precedes cognition, that harnessing the power of emotions for learning increases understanding and retention of information, and that inducing anxiety can improve focus and develop communication skills.”⁵ Simulation exercises are used to put learners in realistic yet safe practice scenarios that do not have the potential to harm patients These exercise are often carried out with standardized patients, i.e., patients that resemble the type of patient that the learner is being trained to treat.⁵ These standardized patients engage in role playing in a pre-designed scenario, and may be fellow students, professional actors, or actual people who have varying diseases, disabilities, or healthcare concerns.

Designing the Training

     Research into the use of simulation for education of medical and nursing students predominantly focuses on two main aspects: structure of the design process, and the fidelity of the simulation as it relates to outcomes of the learners. There seems to be an overwhelmingly greater amount of research articles written about the concern about the fidelity of the simulation than there have been about the structure of the design process. Thus, at first glance, one might conclude that fidelity is the most important aspect of the design process when designing learning experiences in a simulated environment, and that perhaps the choice of structure of the process is less of a factor in predicting outcomes. However, Symons, McGuigan & Akl (2009) suggest that the six-step approach put forth by Kern, Thomas, Howard and Bass might be the best approach for developing  curriculum for medical students to care for people with disabilities, regardless of whether or not simulation is used as a technique of implementation. The six-steps are (1) problem identification and general needs assessment, (2) needs assessment of targeted learners, (3) goals and objectives, (4) educational strategies, (5) implementation, and (6) evaluation and feedback.^6,7

     When designing simulated instruction, it is important to consider how context and culture could alter the case. “As is the case when designing any clinical scenario, the context of the simulated environment is essential.”⁸ Often, the instructional designer has experience in, and understanding of, the real environment which the simulation is supposed to replicate. However, that might not always be the case. If designers do not have experience functioning in the real environment for which the training is targeted, they may erroneously design instructional simulations that result in learning that cannot be transferred to the intended real environment. For example, if a designer is designing instruction in a setting in a location where resources might not be as readily available as they are in the simulated location, such as might be true if the real environment was in a different country than where the instruction takes place, the resource limitation may interfere with the training’s effectiveness when learners are placed in the real environment. “Failure to incorporate relevant and specific resource limitations can yield simulation scenarios ranging from unrealistic to potentially dangerous.”⁸

     In order to address the issue of context of the simulation, instructional designers must collaborate with those who are familiar with the setting that the simulation is trying to replicate. Since collaboration of this type and potential magnitude might be difficult and costly, it is important that sustainability of the simulation be considered during the design process. “Several factors promote sustainability: (a) using low-cost, low-fidelity simulators that require minimal maintenance and training, (b) limiting supplies needed for facilitating the scenario, and (c) having collaborators eager to continue the curriculum.”⁸   

     During the design process of the simulation, the designer must anticipate and incorporate obstacles learners may encounter in the real environment that the simulation is attempting to replicate. Although simulation is a means for providing an opportunity for learning in an environment of safety for both the patient and healthcare provider, it might not be able to fully prepare the learner for the vulnerability of the real world unless such preparation is incorporated into the design of the learning experience.⁸

     The fidelity of a simulation can be defined as the “degree to which the simulator replicates reality.”⁹ A categorization of educational medical simulation tools as they measure on a fidelity scale has been proposed by Guillaume Aliner (2007). Level 0, the level with the lowest fidelity, includes written patient management problems in a classroom. Level 1 consists of three-dimensional, basic human-sized mannequins in a clinical skills room or classroom. This is considered a low fidelity simulation model, and is sometimes referred to as part-task simulation. Level 2 includes screen-based simulators such as computer simulations, videos, DVDs, or virtual reality either in a multimedia laboratory or classroom. On Level 3 are standardized patients (SP). These can consist of fellow students or real actors engaging in role play. Level 4, the level considered to have intermediate fidelity, consists of patient simulators. An example of this is a computer controlled, programmable, full-body sized human model that is not interactive but is, instead, controlled by the trainer. The simulation can occur in a clinical skills room or in a simulated medical room such as a simulated ICU or simulated emergency or operating room. The simulation level with the highest fidelity, Level 5, is the one that is closest to the real world. It is not merely realistic, but approximates the real world environment to the highest degree possible in a simulation. Examples of Level 5 simulators are interactive patient simulators or computer-controlled, model-driven patient simulators. This simulation is typically student-led as opposed to being controlled by the trainer.¹⁰

     It is important to note that Aliner, when identifying and categorizing fidelity levels for simulated patients, does not include the employment of persons with intellectual disabilities to engage in role playing of patients similar to themselves. Thacker, Crabb, Perez, Raji, and Hollins argue that it is critical to include standardized patients who actually have intellectual disabilities (ID) in order to train healthcare professionals to care for them. “Professionals may wrongly attribute distressing symptoms and behaviors to the ID itself [if ] they have not been trained to communicate with people with ID.”  Further, “[s]imulated patients with ID with genuine language limitations and an authentic experience of coping with life as a disabled adult can expose communication problems in a way that even the most skilled non-disabled actor cannot.”¹¹

     Although fidelity is well-recognized as a key consideration in designing the simulation, it must be noted that the term, itself, may be used and interpreted differently among stakeholders. In Reconsidering Fidelity in Simulation-Based Training (Hamstra et. al., 2014), the authors draw a distinction between structural and functional fidelity. Structural fidelity refers to how the simulator appears, where functional fidelity refers to what the simulator does. The authors contend that there needs to be shift from focusing on the physical resemblance of a real environment to considering functional task alignment with that environment.¹² 

Case Study

     The rationale behind the case study discussed in Measuring the Impact of a “Point of View” Disability Simulation on Nursing Students’ Empathy using the Comprehensive State Empathy Scale¹³ is that, although empathy is an integral part of professional medical practice, vulnerable patient groups such as those with disabilities often experience healthcare that is lacking in it. The study was designed using a pre-test and post-test based on the Comprehensive State Empathy Scale, an existing, widely used measurement tool. In addition to designing the simulation exercises, the designer needed to create a method of choosing the participants and assigning their roles.  The designer had to choose the location of the simulation exercises and plan the construction of a physical space that replicates the real environment.  Lastly, the designer had to determine the tools needed, such as special clothing and wheelchairs, to assist the standardized patients and nurses to best experience their roles.

     Second year Bachelor of Nursing (BSN) students from three campuses of one Australian university were recruited using an announcement posted on an electronic learning management system. Students were asked to email the researchers if they wished to participate in the study. A total of 390 students ultimately participated in the study. The students were randomly put into pairs of two, one student being the standardized patient with acquired traumatic brain injury and the other student being a rehabilitation nurse. Once student pairs were chosen, the choice of roles was determined by the toss of a coin.

     During the actual point-of-view simulation exercises, the standardized patients were dressed in special clothing that forced them to experience the medical conditions they might have after acquiring a brain injury after an automobile accident. These participants were asked to “imagine that they had an acquired brain injury (ABI) as a result of an automobile accident three months prior.”  They spent the entire simulation session sitting in a wheel chair. Participants who role played a rehabilitation nurse were dressed in typical attire for that position, and they were given specific instructions as to what to do with their patients. For example, one task was to assist with pouring and drinking from a glass. Another task was to leave the patient alone for five minutes in a heavily trafficked area and observe the patient and his/her surroundings.

     After the simulation exercises were complete, groups of 6-8 students at a time were debriefed by a facilitator. Most of the questions to the participants involved how they felt about what they did and what they observed. The data collected from the pre-tests and post-tests surprised the researchers. They had expected that the participants in the role of patient would have a higher increase in empathy than the participants in the role of nurse, but the results were just the opposite. Even though both sets of students showed an increase in empathy toward people with disabilities, it was the set of students that played the role of the rehabilitation nurse that benefitted the most from the exercise with regard to increased empathy toward these types of patients.¹³

Analysis of the Case Study

     Although not specifically addressed in the journal article written about the case study, each of the six steps of the design process as set by Kern, Thomas, Howard and Bass⁷ were included, even if to a very small degree. First, the problem was identified as the lack of empathy of nursing students and possibly people in healthcare, in general, toward patients with disabilities. Second, the targeted learners were nursing students and, presumably, the needs assessment demonstrated that the nursing school curriculum lacked a successful methodology for teaching empathy toward these special patients. Third, the goal or aim was clearly stated as “to examine the impact of an immersive point-of-view simulation on nursing students’ empathy towards people with an Acquired Brain Injury.”¹³ Fourth, the educational strategies included simulation using standardized patients from the pool of nursing student participants. Fifth, the implementation phase included stages of recruitment of participants, the location of the simulation, the accessories (e.g., wheelchair and clothing) to be used, the determination of roles, and the instructions to be given to the participants during the actual simulation. Lastly, evaluation was performed using data collected from pre-tests and post-tests using am establish empathy scale, and participants were debriefed using predetermined questions they were to answer.

     It was not clear from the write-up of the case study whether or not the authors considered context and culture in their design and evaluation of the simulations. However, since all participants were students in their second year of nursing school, it could be presumed that they all had previously been exposed to the real environments that were replicated for the simulation and to any real environments where the simulation exercises may have taken place. The data collected captured statistics with regard to each participant’s prior experience caring for a person with a disability, country of birth, gender, language, and healthcare experience and certifications. However, it was not clear from the results presented if any of the differences in culture or background influenced the change in degree of empathy as a result of the simulation exercises.

     On Alinier’s proposed levels of fidelity ¹⁰, this case study falls on Level 3, i.e., role playing using fellow students as standardized patients and standardized rehabilitation nurses. Alinier sets Level 3 as one level lower than an intermediate level of fidelity.  Thus, the simulation was realistic but not close to real. It was not clear from the write-up of the case study whether the so-called heavily trafficked area where the standardized patients were left alone was a real healthcare location or some other simulated location. However, it was clear from the write-up that the standardized patients were left alone outside of what was considered the simulation room.¹³

     It is difficult to determine from the write-up of this case study whether the simulation environment contained structural or functional fidelity. There was no clear description of the simulation room as compared to the real environment it was supposed to replicate. However, there were some attempts to replicate authentic tasks that a rehabilitation nurse might do in a real environment, such as by trying to communicate with the standardized patients and moving them in their wheelchairs. Where fidelity was lacking was when the standardized patients were asked to “imagine” that they had an acquired brain injury (ABI). This seems like a peculiar type of exercise because it is difficult to comprehend that anyone who does not have an ABI would be capable of imagining such a thing, even if one has had many years of experience being at the side of someone with that condition. Fidelity may have also been lacking when the standardized nurses were asked to leave the standardized patients alone in a heavily-trafficked area. While it is questionable whether this scenario would occur in a real environment, it is not far-fetched to think that healthcare practitioners may have to leave patients alone in hospital hallways and other moderately trafficked areas for brief period of time.

       It is not clear whether all of the principles of sustainability set forth by Pitt, Eppich, Shane and Butteris⁸ were considered.   On the one hand, using the nursing students to serve as the standardized patients and nurses kept cost low and required minimal training. However, the ease of access and cost of the specialized clothing worn by the standardized patients to simulate symptoms of an acquired brain injury were not addressed. Further, it was not clear whether the authors found it necessary to collaborate with other healthcare professionals or administrators of the nursing program, and the eagerness of others besides the designers to continue the training was not addressed.

Conclusion

     It is encouraging to have discovered that, over the past ten or more years, there has been a real effort to consider the training of healthcare workers in treating people with intellectual and physical disabilities. Clearly, it is critical that continued research be done in this field in order to bring into reality principles of instructional design that are effective in this regard.

     In the case study discussed herein, people who were also the learners were used to implement the simulation exercises. It would be interesting to see if similar, if not better, results could be obtained using videos of people who actually had acquired brain injuries or using avatars (technological representations) of such people that were part of a gamed-based simulation delivered in web-based or virtual-reality learning environment. In that way, the simulation could be interactive, have a high level of fidelity, and be more sustainable than requiring the recruitment of role players and trainers every time the training is offered. Although it might take a larger amount of up front financial investment, the development of such a platform could easily be used to teach empathy for many different kinds of patients, and not just patients with one type of medical concern or condition such as was done here.

     Research has suggested that nursing students have been able to learn clinical reasoning by playing a simulation game.¹⁴ Future research needs to be done in the field of game-simulation to teach nursing and medical students empathy. Most of us have experienced watching a Hollywood-made movie where, even though we intellectually knew the characters were not real, we became so attached to the characters that we cried or felt overwhelming joy for their plight. If people can feel empathy for fictional characters on a movie or television screen, then they should be able to feel empathy for real people with real medical needs if properly portrayed in a simulated technological environment such as in an educational game-simulation.

     Any deed worth pursuing takes time and thoughtful consideration. It is my hope that research followed by practice continues to move in the direction in which the case study began, i.e., teaching the healthcare community to have empathy toward people with disabilities. To generalize what Liz Weintraub and Dr. Shriver professed ¹, if we can train the medical community to care about people, then we can train the medical community to care for people.    

References

1. Landoli E (2019, February). Einstein adds curriculum on adults with intellectual and developmental disabilities, Albert Einstein College of Medicine – The Doctor’s Tablet blog, http://www.einstein.yu.edu/news/releases/1327/einstein-adds-curriculum-on-adults-with-intellectual-and-developmental-disabilities/

2. Shriver T, Weintraub L (2019, October). Beyond the data – Addressing gaps in health care for individuals with intellectual disabilities, Centers for Disease Control and Prevention (CDC), https://www.youtube.com/watch?v=Z4i6rCx2bEo

3. Ratka A (2018, December). Empathy and the development of affective skills, Am J Pharm Educ, 82 (10) Article 7192

4. Abdulmohsen H (2010, Jan-Apr). Simulation-based medical teaching and learning, J Family Community Med.,17(1):35-40

5. Donlan P (2018, Winter). Developing affective domain learning in health professions education, Journal of Allied Health, Vol 47. No. 4

6. Symons AB, McGuigan D & Akl EA (2009). A curriculum to teach medical students to care for people with disabilities: Development and initial implementation, BMC Medical Education

7. Kern DE, Thomas PA, Howard DM & Bass EB (1998). Curriculum development for medical education: A six step approach Baltimore: Johns Hopkins University Press

8. Pitt MB, Eppich W, Shane M & Butteris S (2017, June). Using simulation in global health: considerations for design and implementation, Society for Simulation in Healthcare Journal, 178

9. Vonthoff T (2017, August).The importance of fidelity in simulation and training, Modern Military Training, http://modernmilitarytraining.com/training-realism/importance-fidelity-simulation-training/

10. Alinier G (2007). A topology of educationally focused medical simulation tools, Medical Teacher, 29:8, e243-250

11. Thacker A, Crabb N, Perez W, Raji O & Hollins S (2007). How (and why) to employ simulated patients with intellectual disabilities, The Clinical Teacher, 2007, Vol 4, 15-20

12. Hamstra S, Brydges R, Hatala R, Zendejas B & Cook D, (2014, March). Reconsidering fidelity in simulation-based training, Academic Medicine, Vol. 89 No. 3

13. Levett-Jones T, Lapkin S, Govind N, Pich J, Hoffman K, Jeong S, Norton CA, Noble D, Maclellan L, Robinson-Reilly M & Everson N (2017). Measuring the impact of a “point of view” disability simulation on nursing students’ empathy using the Comprehensive State Empathy Scale, Nurse Education Today 59 75-81

14. Koivisto J, Niemi H, Multisilta J & Eriksson E (2017). Nursing students’ experiential learning processes using an online 3D simulation game, Inf., Technol, 383-398