Disability affects approximately 60 million or one in every four or five people in the United States, making this population the largest minority group in the country (U.S. Census Bureau, 2010, 2013). One billion people worldwide have a disability (World Health Organization [WHO] & World Bank, 2011). Disabilities occur in all ages, all racial and ethnic groups, and both genders. It affects 13.9% of children, 11% of individuals aged 18 years to 44 years, 23.9% of individuals aged 45 years to 64 years, and 51.8% of individuals 65 years and older (U.S. Census Bureau, 2010). The prevalence of people with disability (PWD) increases with age: 53.6% of individuals older than 75 years to 79 years, and 70.5% of individuals 80 years and older have a disability; of these, 37.5% and 55.8%, respectively, have a severe disability (U.S. Census Bureau, 2010).
Despite the large and growing population of PWD, students in health professions programs, including nursing, have little exposure to PWD and little content in their programs or textbooks to learn to provide quality care to this population of patients (Iezzoni & Long-Bellil, 2012; National Council on Disability, 2009; Smeltzer, Dolen, Robinson-Smith, & Zimmerman, 2005; Smeltzer, Robinson-Smith, Dolen, Duffin, & Al-Maqbali, 2010). As a result, the health and health care of this population are compromised (Iezzoni & Long-Bellil, 2012; Smeltzer, Avery, & Haynor, 2012).
To address this gap in nursing education, respond to multiple calls for action from various organizations and groups, and prepare students to provide quality health care to PWD (Institute of Medicine, 2007; National Council on Disability, 2009; Smeltzer, 2007; U.S. Department of Health and Human Services 2002, 2005; WHO, 2011), the nursing faculty in an undergraduate baccalaureate nursing program developed and implemented an innovative educational program. These calls for action have indicated the need for strategies to increase students' knowledge and improve their skills and attitudes about disability. This article describes an innovative approach used to integrate disability-related concepts and content in an undergraduate nursing program through integration of standardized patients with disabilities (SPWD), an approach that can be replicated by faculty in other schools of nursing.
Essential to addressing disability in nursing is understanding definitions of disability and models of disability. Although many definitions exist, the project faculty utilized those of the Americans with Disabilities Act, World Health Organization (WHO), and International Council of Nursing (ICN) to assist the program. The Americans with Disabilities Act (1990) defined disability as a physical or mental impairment that substantially limits one or more major life activities; a record or history of such an impairment; or a perception by others as having such impairment. The WHO (2000) defined disability as an umbrella term for impairments, activity limitations, or participation restrictions; this definition moved away from consequence of disease to one on health and factors that affect health. The WHO (2000) viewed disability as a dynamic interaction between health conditions (i.e., diseases, disorders, injuries) and contextual factors (i.e., personal and environmental factors) that affect health. Finally, the ICN (2010) defined disability as a physical, mental, sensory, or social impairment that, in the long term, adversely affects one's ability to carry out normal day-to-day activities. The ICN supports programs designed to integrate PWD in all aspects of daily life: family, school, work force, and community. The ICN (2010) identified the following strategies for nursing education to increase nursing's effectiveness in caring for PWD (a) address competencies needed for the prevention of disability, and the care and rehabilitation of PWD; (b) promote fuller understanding of the particular problems faced by PWD and their families; and (c) promote advocacy skills and a knowledge of programs and resources in the community on the part of nurses. The ICN emphasizes the role of nursing in the care of PWD and their families in assisting them to lead fulfilling lives.
Although several models of disability exist, adoption of a model to ensure that nursing students are prepared to provide high-quality care to PWD was essential for this project. The project staff adopted the Goodall (1995) interface model of disability. This model is based on the premise that individuals with disability, rather than health care professionals, are the experts on their own disabilities and addresses disability at the intersection of PWD health issues and environmental barriers.
The purpose of the SPWD project was to address the gap in caring for PWD in an undergraduate baccalaureate program by introducing the topic of disability and exposing students to PWD in a learning environment that integrated SPWD throughout the undergraduate curriculum in simulation-based experiences (SBEs). Although SPWD have participated in medical education (Long-Bellil et al., 2011; Woodard, Havercamp, Zwygart, & Perkins, 2012), they are infrequently used in undergraduate nursing education. The goal was to create and implement a plan that integrated disability-related concepts into the undergraduate program through students' interaction with SPWD. Project faculty realized that it was essential to do so without disrupting the existing curriculum or increasing faculty workload, if other faculty members were to accept the plan.
Based on the need to address disability in nursing education, a group of faculty across the curriculum with an interest in simulation and disability education, along with the director of the simulation center, formed a work group to address this gap in the program. The goals were to have a smooth transition by modifying several existing SBEs to integrate disability-related concepts into the current curriculum and to expose students to people with actual disabilities serving as SPWD. The curriculum and preexisting simulation scenarios used from the beginning of the freshman year to the final semester in the senior year were reviewed by the project team to determine ways to modify them to add SPWD. After a preliminary plan was developed, the team applied for and received a grant to implement the project.
The project director provided an overview of the plan and the goals of the project team at an undergraduate program meeting. Keeping faculty informed and giving them a voice were crucial to the success of the project. Faculty were assured that they would be well informed throughout the project and that their input and feedback would be solicited to identify where disability concepts could be integrated into SBEs across the curriculum. The team shared their vision and the goals of the project with the course leaders, providing them with an opportunity to weigh in on this concept and share their concerns or reservations. Collaboration and communication were critical to the success of the integration and demonstrated that the project team valued faculty feedback. The plan was presented as an integral part of the existing curriculum, rather than an as addition to it, which helped faculty to understand the importance of teaching the undergraduate students about disability and having them interact with SPWD. This method of presentation also further ensured faculty that there would be minimal disruption to the existing curriculum and faculty workload would not increase. Moreover, this discussion provided an opportunity to make faculty aware of the care needed for PWD. Following meetings with the course leaders, the project team met with specific course faculty to share the plan. Faculty members' questions and concerns, such as how disability would be integrated into existing courses and expected outcomes, were addressed.
Recruitment and Training of PWD
After faculty members agreed to the plan, the next steps were the recruitment and training of PWD to participate in the project. Through networking with various organizations and personal contacts, 10 PWD were identified and invited to a training session to learn about the project and what would be expected of them. These individuals, who had physical disabilities (e.g., post-polio syndrome, stroke, spina bifida, amputation, and spinal cord injury), participated in a 4-hour training session to learn about the project and the goal to improve the health care of PWD. Given that all of them had extensive experience with the health care system, they easily identified with the project's aims and eagerly agreed to participate. The training consisted of a discussion of students' experiences, introduction to the scenarios, review of expectations of them during the scenarios, and discussion of the importance of providing constructive feedback to the students. The PWD reviewed the scenarios and provided input to make the scenarios consistent with their actual disabilities. Role-playing was used in the training to ensure SPWD familiarity with the scenarios and enhance their comfort with providing feedback to students on their performance. The SPWD received $20 per hour for their contribution to the project and the education of students.
Developing, Modifying, and Implementing Simulation-Based Experiences
The integration of SPWD in SBEs began in fall 2012. The first SBEs were introduced in the first semester of freshman year. To prepare for the new experience, the students and faculty were assigned reading on caring for patients with disability from the Textbook of Medical–Surgical Nursing (Smeltzer, 2010), with a focus on effective communication with PWD.
The first SBE was a videotaped communication scenario with an SPWD, a 25-year-old woman with a T-7 level spinal cord injury who used a wheelchair. The videotaped scenario, which was shown in a large classroom, addressed the nurse's interaction with the SPWD, who arrived at the health care practitioner's office for a physical examination and to have a persistent sore throat assessed. The 10-minute interaction between the nurse and SPWD demonstrated inappropriate communication and actions (e.g., nurse talked to the patient's mother instead of her; ignored her disability; directed her to hop up on the examination table). After viewing the videotaped scenario, groups of six to 10 students participated in a faculty-guided discussion, followed by a structured debriefing using a debriefing guide focused on communication and disability etiquette. Following debriefing, the students viewed a second scenario, this time with the same nurse demonstrating exemplary communication that addressed the special considerations of PWD. This was followed by a brief interview with the SPWD, which provided additional insight about her personal health care experiences. Consistent with the International Nursing and Clinical Simulation in Nursing Standards of Best Practice: SimulationSM (Decker et al., 2013), debriefing was included as an integral component of all simulations.
Other preexisting simulations were modified to include SPWD. For example, the summative freshman capstone scenarios were adjusted to address communication with an SPWD, patient education, hand hygiene, and vital signs. The capstone scenarios had previously been used without SPWD so there was evidence that the simulation scenarios were well written and effectively executed in the past.
Formative sophomore level scenarios were modified to add SPWD to SBEs that addressed health assessment and essentials of nursing practice skills, such as musculoskeletal assessment and repositioning and transferring an SPWD out of bed. The revised sophomore simulation scenarios included an SPWD rather than a classmate in the role of the patient, which created more authenticity and fidelity in the simulation.
During the freshman and sophomore level SBEs, the students had the opportunity to work directly with a person who had an actual disability, which allowed the students to practice skills with people who had realistic issues. As part of the SBEs, all students participated in debriefing sessions, which included the opportunity to interact with and receive feedback from the SPWD, as well as from the faculty facilitator.
A new simulation scenario with an SPWD was added to the maternal health course in a well-woman scenario in which the students assessed the needs of a woman with a physical disability going home with her newborn. The final opportunity for the students to work with SPWD was in the last semester of their senior year during his or her home health experience. An existing home health simulation scenario was modified by including an SPWD. In the scenario, the patient with an above-the-knee amputation has heart failure and diabetes, which requires him to safely weigh himself every day. This simulation scenario was relatively unchanged from previous semesters except for the inclusion of the SPWD with an actual amputation. For many senior students, this provided his or her first opportunity to interact with a patient who had an actual amputation and prosthesis. During the scenario, students interacted with the SPWD, and during the debriefing, the students received valuable feedback from the SPWD.
Of importance in minimizing changes to the curriculum is all of these SBEs had been used successfully prior to integrating the SPWD. Thus, the team knew that the simulation scenarios were developed according to the International Nursing and Clinical Simulation in Nursing Standards of Best Practice: Simulation (Decker et al., 2013) and were reliable in addressing essential curricular content.
Project staff are evaluating the effect of the program using a mixed-method design. Students completed two standard and widely used attitude surveys, with a total of 50 Likert-type items before they interacted with SPWD and prior to their graduation and also responded to four questions asking about their experience with SPWD. Table 1 presents students' responses to four questions asked in the survey they completed at the end of their senior year after interacting with SPWD in simulations during all 4 years of their program. As is clear from their responses, students valued and learned from the experience, although their scores on the two attitude surveys did not differ over time.
Samples of Typical Student Responses to Four Questions About Experiences With Standardized Patients With Disabilities
With the implementation of any new project or content within a curriculum, there were lessons learned that helped the team improve and strengthen the project. A goal was to integrate the disability-related concepts with relatively little disruption to the existing curriculum. Despite all efforts to do so, there were times when changes were needed to ensure educationally sound experiences for the students. Although most faculty were supportive, challenges existed in terms of faculty members' time and resources. In addition, respect of SPWD time and abilities also had to be considered. Students' engagement, interest, and active participation varied. Another important issue to be considered is the availability of financial and organizational support to ensure the long-term sustainability of the program. Initial funding for paying SPWD came from the grant received to support the project. However, it is essential that financial support is available to pay SPWD for their meaningful work and contributions to the program.
The project team and simulation staff worked with the SPWD to ensure positive experiences for them, as well as students. Challenges included parking, scheduling, SPWD fatigue levels, and accessibility of the educational facility. Although some of these issues were anticipated, it was difficult to predict the scope of these concerns until the project was implemented. Because many of the SPWD commuted almost 1-hour to participate in the program, they participated in several SBEs in 1 day. Even with scheduled breaks, this schedule was rigorous and fatiguing for some SPWD. In addition, the SPWD found the state-of-the-art Americans with Disabilities Act-compliant nursing building to be inaccessible due to heavy doors and limited handicapped parking. As a result, more handicapped parking spaces were added close to the building.
With any new innovative idea, the buy-in or acceptance by the faculty was crucial to the success of the SPWD program. The project team had asked the faculty to adopt a new method of teaching in several areas of the curriculum, and although the project showed some promising feedback from the students and SPWD, the change was not always easy. However, many faculty welcomed the opportunity to work with SPWD, and in many cases the SPWD were the best advocates for the program (Coyle & Smeltzer, 2014; Smeltzer et al., 2015). Students have provided positive feedback about the experiences with the SPWD.
An essential aspect of the project for the sustainability of the SPWD program was the emergence of a team of champions who comprised the project team. They serve as advocates for the project with faculty and administration when questions about its sustainability arise. The project has gained national attention through professional presentations and the project director's request for multiple meetings with the National League for Nursing. These discussions resulted in the Villanova project team's development of an addition to the National League for Nursing's Advancing Care Excellence series: Advancing Care Excellence for People with Disabilities, which can be accessed through the National League for Nursing website ( http://www.NLN.org).
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Samples of Typical Student Responses to Four Questions About Experiences With Standardized Patients With Disabilities
|Question||Sample Student Responses|
|What was your initial reaction to encountering a person with a disability in a scenario in the simulation laboratory?||“At first I felt uncomfortable. However, after discussing the disability, I realized that it does not upset the patient to discuss the disability. It is only in my head and it was a good experience.”
“I was not sure whether I should acknowledge the fact that he or she had a disability or just to perform my exam as if there was not a problem.“|
|What was your reaction to the standardized patient with a disability once you started interacting with him or her?||“I became more comfortable as we were able to discuss the disability and ways to help.”
“I was concerned about the medical implications of her disability, and wanted to know more, so as to be able to best provide for my patient and serve her needs.“
“The patient made us feel very comfortable and realized it is best not to ignore the disability because you are uncomfortable but ask what is the best way to carry out your tasks.“|
|Was the experience of interacting with a standardized patient in the scenario a valuable experience? If so, why? If not, why?||“It is valuable because it allows you to interact with people with a disability in an environment when you can learn, but also realize people with disabilities are human too and you shouldn't be afraid to talk to them.”
“The experience was very valuable, I learned to address the disability and not turn a blind eye. The disability is part of the patient's health status, so in order to provide holistic care, the disability must be addressed.”|
|How strongly would you agree that we should continue to have standardized patients with disabilities in the scenarios?a||Strongly agree: 77.6% (n = 215)
Agree: 17% (n = 47)
Neither agree nor disagree: 4.3% (n = 12)
Disagree: 0.72% (n = 2)
Strongly disagree: 0.36% (n = 1)|