1 Education and Confidence of Nursing Care in Patients with Autism by Rebekah Arensman A Signature Honors Project Presented to the Honors College East Carolina University In Partial Fulfillment of the Requirements for Graduation with Honors by Rebekah Arensman Greenville, NC April 21, 2024 Approved by: Jan Tillman DNP, MSN, RN, FNP-BC East Carolina University College of Nursing 2 Abstract Autism Spectrum Disorder affects roughly 1 in 100 people and can range in severity. Nurses are trained to care for a variety of patients; however, preliminary review of literature indicates that nurses are underprepared to care for patients with autism. The purpose of this study was to investigate the preparedness and competence of nursing care for patients with ASD at multiple stages in their careers and in various specialties. A researcher-developed survey was sent to current East Carolina University nursing students in doctorate, masters, and baccalaureate programs. The survey investigated both education and personal feelings of confidence in providing nursing care to patients with autism across the various programs. Results indicate lack of education and experience in clinical practice in caring for patients with autism. These results indicate a need for change in the nursing curriculum and clinical practice to better equip students as they prepare for professional careers. Keywords: autism spectrum disorder, nursing, education, confidence 3 Education and Confidence of Nursing Care in Patients with Autism Autism spectrum disorders (ASD) are defined as a difference in brain development that leads to disability (Yasir & Khudhair, 2021). The term autism originates from the Greek to purvey the idea of an “isolated self” (Yasir & Khudhair, 2021). Within ASD, developmental abilities range from high to low functioning (Yasir & Khudhair, 2021). Communication can be a challenging skill for individuals with ASD to learn (Yasir & Khudhair, 2021). Often additional communication technologies and training will be implemented to aid in speech and communication development (Yasir & Khudhair, 2021). Nurses are challenged with understanding and caring for these patients which can lead to barriers in care. Understanding cues in patients with autism is a learned skill that many nurses, especially new nurses, may not possess. Background The World Health Organization estimates that roughly 1 in 100 people in the world have autism. The Centers for Disease Control and Prevention (CDC) estimates that 1 in 34 children in the United States is diagnosed with autism (ASD, 2023). Roughly 25-35% of people with an ASD are nonverbal (Rose et al., 2016). These individuals’ ability to process information and express themselves varies. Signs and symptoms of ASD are drastically diverse; however, lack of social interaction, repetitive behaviors, and delayed language skills can be commonly seen (CDC, 2023). These behaviors can change how this population interacts and develops which can alter best practices in nursing care. Due to the prevalence of this population, nurses will encounter patients with ASD throughout their careers; however, nurses are often not trained in the best practices for the care of these patients (McClain et al., 2020). The nursing profession is rooted in providing competent care and establishing trust and rapport through communication 4 (Yasir & Khudhair, 2021). The care of individuals with special needs requires new strategies to supply effective and humane treatment. Nurses receive rigorous training in their specialty through two years of schooling where they experience a variety of settings and specialties; however, in their education, students rarely participate in care of patients with autism or experience standardized patient simulation (McIntosh et al., 2018). This leads to nurses in the field lacking experience in effective interactions with patients on the autism spectrum. Purpose The purpose of this study was to investigate the preparedness and competence of nurses who care for patients with autism at multiple stages in their careers and in various specialties. The research will allow East Carolina University College of Nursing to determine the strengths and weaknesses of their nurse graduates and students. In doing so, the school can determine if nursing curriculum should be revised to include additional education on ASD. The findings will inform further conversations about the need for a shift in nursing education and training. Methods Using a quantitative research design, a survey was administered to East Carolina University nursing students in doctorate, masters, and baccalaureate programs. In preparation for this study, IRB approval, literature reviews, and data survey courses were completed to competently prepare the author to build a survey and understand how to gather and interpret data. Two faculty from the College of Nursing reviewed the survey for efficacy. The survey consisted of three subsections: demographics, confidence, and education. Demographic information including age, years of experience, and nursing degree program, was collected, but no personally identifiable data was collected (see Table 1). The Confidence survey focused on individual feelings toward caring for a patient with autism (see Table 2). This survey allowed students to 5 express their confidence in providing various aspects of care commonly seen in nursing for patients with autism. The Education survey focused on nursing students’ education about caring for patients with autism (see Table 3). The questions explored students’ personal experiences with their nursing curriculum as well as assessed their basic understanding of ASD. The questions were developed based on literary evidence that supports a correct answer. After revision, the surveys were distributed via email to the students. The survey was left open for 30 days and one reminder was sent a week before the survey was closed. Results Demographics One hundred eleven students in the College of Nursing completed the survey: BSN (n=54), ABSN (n=3), MSN (n=20), PhD (n=3), and DNP (n=31). From the participants, higher education students reported a median of 11 years of nursing experience while undergraduate and ABSN students reported a median of zero years of nursing experience. The survey found that 56.8% of the participants reported never caring for patients with autism in a nursing clinical in majority due to a lack of opportunity. Two participants who responded “yes” to caring for a patient with autism in clinical practice explained their role as caregivers for family members with autism instead of experiencing patient care in clinical. Confidence The responses in the confidence section of the survey indicated that over half of the students had not cared for patients with autism in their nursing school clinicals (see Figure 1). The follow-up questions that specified areas of nursing practice revealed a range of confidence among the nursing students. Most students reported a strong amount of confidence in empathizing with a patient with autism. Responses showed students reported the least confidence 6 in providing medication to patients with autism, understanding social cues of patients with autism, and gathering pertinent history from patients with autism respectively. Education Of the participants, 51.3 % disagreed that they had been educated on differences for patients with autism such as communication, patient care, and behavior (see Figure 2). When comparing the responses of the education survey to the answers based in literature, the responses in general aligned with current research. Some questions had a prevalent number of “neutral” answers (see Figure 3). Additionally, 30.6% of students indicated that there is a negative opinion of persons diagnosed with autism in the nursing community while 26.1 % reported “neutral” to the question. Discussion Lack of Education The data from this survey indicates that nursing students are reporting a lack of education on caring for patients with autism. Research completed through an online survey distributed to over 250 nurse education programs that assessed nurse educators’ perceived knowledge and comfort in teaching on ASD indicated “low knowledge of best practices in ASD care and less than optimal integration of this material and related clinical experiences in the curricula in which they taught” (Gardner et al., 2016 p. 214). The inclusion of ASD content may be minimal in relation to other lessons due to comfortability, lack of knowledge, lack of time, or other barriers. The minimal exposure to ASD teaching may lead to a lack of knowledge in this subject. Additionally, the “neutral responses” seen in the education questions may further indicate a lack of understanding of autism and common nursing considerations for patients with autism. Lack of Clinical Experience 7 Clinical experience is considered a necessary step in building nursing students’ skills and preparing them for practice. The lack of experience in clinical rotations adds to a discrepancy in education on proper methods and approaches to care for these patients. Real-world experience can provide real-world practice and application to accompany classroom learning (McIntosh et al., 2018). Interventions aimed at encouraging instructors to provide students with opportunities to care for a variety of patients, including those with autism, may help improve overall comfort and knowledge. Additionally, the use of a simulation model to help train students on best practices when caring for patients with ASD can be utilized (McIntosh et al., 2018). Limitations These surveys were developed after literature reviews and faculty expertise, so reliability is limited. Responses may be skewed due to individuals’ personal experiences with persons with autism outside of nursing school. This survey represents only a percentage of East Carolina University College of Nursing students. Implications An enhancement in the nursing curriculum, which can focus on specific class time dedicated to proper education on ASD and nursing care for these patients, is needed. Proper education begins with nursing instructors. With the rise of ASD diagnosis, health professionals in all practices should be aware of clinically competent care for patients with ASD (National Autism Center, 2023). Resources for training educators and practitioners are available through the National Autism Center. The training is based on a two-part research project dedicated to improving best practices for healthcare professionals as they work with patients with ASD at all ages. Additional resources are available to help navigate specific struggles and characteristics commonly seen in autism. Training educators on best practices can allow for more informed 8 education in the classroom and may lead to increased comfortability in teaching on the topic of ASD. Additional practices like the use of simulation patients or the implementation of clinical expectations to give students experiences with patients with autism in clinical settings might help improve overall understanding and confidence outcomes for nursing students. McIntosh et al. (2018) implemented the use of a standardized patient to increase student knowledge. Their research not only indicated that this helped improve student understanding but also reported that this approach was more effective than exam questions. Nursing students reported that using a standardized patient allowed for an element of realism and provided an effective way to translate skills taught in the classroom into practice (McIntosh et al., 2018). This study could be completed at various levels across various institutions using the tools developed through the literature review. Data could be compared between nursing programs, universities, and curriculums to determine further prevalence of confidence and educational patterns seen in this study. The survey can be used in large-scale or small-scale research to compare and assess individuals’ confidence and education in care for patients with autism spectrum disorders. Conclusion With the increasing prevalence of ASD, nurses are more likely to treat patients with ASD in professional practice. Nursing schools have the opportunity to better prepare their students to care for this population. Enhancements in education, both in the availability of material and educator understanding can be made to improve current teaching practices and further expose students to the nursing considerations for the ASD population. Implementing standardized patients who have experience in caring for patients with ASD and can provide real-life examples 9 as well as clinical experience with patients with ASD can help strengthen students’ skills and implement their education into practice. 10 References Centers for Disease Control and Prevention. (2023, April 4). Data & statistics on Autism Spectrum Disorder. https://www.cdc.gov/ncbddd/autism/data.html Flannery, K. A., & Wisner-Carlson, R. (2020). Autism and education. The Psychiatric Clinics of North America, 43(4), 647-671. https://doi.org/10.1016/j.psc.2020.08.004 Gardner, M. R., Suplee, P. D., & Jerome-D’Emilia, B. (2016). Survey of nursing faculty preparation for teaching about autism spectrum disorders. Nurse Educator, 41(4), 212216. https://doi.org/10.1097/NNE.0000000000000237 Giarelli, E., Ruttenberg, J., & Segal, A. (2012). Continuing education for nurses in the clinical management of autism spectrum disorders: results of a pilot evaluation. The Journal of Continuing Education in Nursing, 43(4), 169-176. https://doi.org/10.3928/00220124- 20111115-01 McClain, M. B., Harris, B., Haverkamp, C. R., Golson, M. E., & Schwartz, S. E. (2020). The ASKSP revised (ASKSP-R) as a measure of ASD knowledge for professional populations. Journal of Autism and Developmental Disorders, 50(3), 998- 1006. https://doi.org/10.1007/s10803-019-04321-5 McIntosh, C. E., Thomas, C. M., Wilczynski, S., & McIntosh, D. E. (2018). Increasing nursing students' knowledge of autism spectrum disorder by using a standardized patient. Nursing Education Perspectives, 39(1), 32- 34. https://doi.org/10.1097/01.NEP.0000000000000179 https://www.cdc.gov/ncbddd/autism/data.html https://doi.org/10.1016/j.psc.2020.08.004 https://doi.org/10.1097/NNE.0000000000000237 https://doi.org/10.3928/00220124-20111115-01 https://doi.org/10.3928/00220124-20111115-01 https://doi.org/10.1007/s10803-019-04321-5 https://doi.org/10.1097/01.NEP.0000000000000179 11 National Autism Center at May Institute. (2023, September 12). Resources. https://nationalautismcenter.org/resources/ Rose, V., Trembath, D., Keen, D., & Paynter, J. (2016). The proportion of minimally verbal children with autism spectrum disorder in a community-based early intervention programme. Journal of Intellectual Disability Research : JIDR, 60(5), 464–477. https://doi.org/10.1111/jir.12284 Shenouda, J., Barrett, E., Davidow, A. L., Sidwell, K., Lescott, C., Halperin, W., Silenzio, V. M. B., & Zahorodny, W. (2023). Prevalence and disparities in the detection of autism without intellectual disability. Pediatrics (Evanston), 151(2), 1. https://doi.org/10.1542/peds.2022-056594 HANDS in Autism®. (n.d.). Understanding autism. Indiana University. https://handsinautism.iu.edu/education/asd/index.html Stone, W. L. (1987). Cross-disciplinary perspectives on autism. Journal of Pediatric Psychology, 12(4), 615-630. https://doi.org/10.1093/jpepsy/12.4.615 Yasir, M. S., & Khudhair, S. (2021). Effectiveness of health educational program on nurses ' knowledge toward alternative communication strategies for children with autism spectrum disorder at the autism centers in DhiQar governorate. Annals of the Romanian Society for Cell Biology, 25(6), 10030-10035. https://www.proquest.com/scholarly- journals/effectiveness-health-educational-program-on/docview/2616233475/se-2 https://doi.org/10.1111/jir.12284 https://doi.org/10.1542/peds.2022-056594 https://doi.org/10.1093/jpepsy/12.4.615 https://www.proquest.com/scholarly-journals/effectiveness-health-educational-program-on/docview/2616233475/se-2 https://www.proquest.com/scholarly-journals/effectiveness-health-educational-program-on/docview/2616233475/se-2 12 Table 1 Demographics Survey 1) Age ______________ 2) Years of nursing experience ______________ 3) Current Program o BSN o ABSN o MSN o PhD o DNP Table 2 Confidence Survey 1) Have you ever cared for a patient diagnosed with autism during nursing clinicals? o Yes o No o Have not begun clinicals 2) If no, why? o No opportunity o Advised against it o Other On a scale of 1-5, how confident do you feel in your ability to complete the following 1- Not Confident 2- Somewhat confident 3- Moderately confident 4- Mostly confident 5- Fully confident 3) Providing medication and education to patients with autism o 1 o 2 o 3 o 4 o 5 4) Gathering pertinent history for a patient with autism o 1 o 2 o 3 o 4 o 5 13 5) Understanding different social cues from a patient with autism o 1 o 2 o 3 o 4 o 5 6) Communicating with a patient with autism o 1 o 2 o 3 o 4 o 5 7) Understanding and empathizing with the patient with autism and their family o 1 o 2 o 3 o 4 o 5 Table 3 Education Survey On a scale of 1-5, how confident do you feel in your ability to complete the following 1- Not Confident 2- Somewhat confident 3- Moderately confident 4- Mostly confident 5- Fully confident 1) I have been educated on the differences in patients with autism o 1 o 2 o 3 o 4 o 5 2) I believe there is a difference in providing care for a patient with autism o 1 o 2 o 3 o 4 o 5 3) I feel prepared to care for a patient with autism in clinical practice. o 1 o 2 o 3 o 4 o 5 14 4) Autism exists only in childhood o 1 o 2 o 3 o 4 o 5 5) There is a negative opinion of persons diagnosed with autism in the nursing community o 1 o 2 o 3 o 4 o 5 6) Some persons with autism do not talk o 1 o 2 o 3 o 4 o 5 7) Medication can alleviate the core symptoms of autism o 1 o 2 o 3 o 4 o 5 8) There is currently no cure for autism o 1 o 2 o 3 o 4 o 5 9) Autism is preventable o 1 o 2 o 3 o 4 o 5 10) Persons with autism can grow up to live independently o 1 o 2 o 3 o 4 o 5 11) Persons with autism usually have problems with aggression o 1 o 2 o 3 o 4 o 5 12) Autism affects people of all race and ethnicities o 1 o 2 o 3 o 4 o 5 15 13) Persons with autism need extra help to learn o 1 o 2 o 3 o 4 o 5 14) Persons with autism are never too old to benefit from treatment o 1 o 2 o 3 o 4 o 5 15) The earlier treatment of autism starts the more effective it tends to be o 1 o 2 o 3 o 4 o 5 16) Most persons with autism are usually intellectually disabled o 1 o 2 o 3 o 4 o 5 17) Many people with autism show the need for routine and sameness o 1 o 2 o 3 o 4 o 5 18) Vaccinations cause autism o 1 o 2 o 3 o 4 o 5 19) Many persons with autism perform ritualistic behaviors o 1 o 2 o 3 o 4 o 5 20) Autism is primarily a disorder of emotions o 1 o 2 o 3 o 4 o 5 21) Early intervention can impact an individual’s social and communication skills o 1 o 2 o 3 o 4 o 5 16 22) Persons with autism will not initiate eye contact o 1 o 2 o 3 o 4 o 5 23) Patients with autism will not show emotional attachment o 1 o 2 o 3 o 4 o 5 24) With proper treatment, patients can overcome and outgrow autism o 1 o 2 o 3 o 4 o 5 25) People with autism benefit from routine and sameness in daily life o 1 o 2 o 3 o 4 o 5 26) Patients with autism benefit from a standardized treatment plan o 1 o 2 o 3 o 4 o 5 Note: Bolded answers indicate correct answers according to the literature review 17 Figure 1 Percent of students who have care for patients with autism Figure 2 Education on nursing care for patients with autism 3 8 .7 0 % 5 6 .8 0 % 4 .5 0 % Y E S N O H A V E N O T B E G U N C L I N I C A L S STUDENTS WHO HAVE CARED FOR PATIENTS WITH AUTISM IN CLINICAL 2 2 .5 0 % 2 8 .8 0 % 1 8 .0 0 % 1 8 .0 0 % 1 2 .6 0 % S TR O N GLY D I S AGR E E S O M E WH AT D I S AGR E E N E U TR AL AGR E E S TR O N GLY AGR E E "I HAVE BEEN EDUCATED ON THE DIFFERENCES OF PATIENTS WITH AUTISM" 18 Figure 3 Education Question Responses 0% 20% 40% 60% 80% 100% Autism exists only in childhood Some persons with autism do not talk Medication can alleviate the core symptoms of autism There is currently no cure for autism Autism is preventable Persons with autism can grow up to live independently Persons with autism usually have problems with aggression Autism affects people of all race and ethnicities Persons with autism need extra help to learn Persons with autism are never too old to benefit from treatment The earlier treatment of autism starts the more effective it tends to be Most persons with autism are usually intellectually disabled Many people with autism show the need for routine and sameness Vaccinations cause autism Many persons with autism perform ritualistic behaviors Autism is primarily a disorder of emotions Early intervention can impact an individuals social and communication skills Persons with autism will not initiate eye contact Patients with autism will not show emotional attachment With proper treatment, patients can overcome and outgrow autism People with autism benefit from routine and sameness in daily life Patients with autism benefit from a standardized treatment plan EDUCATION QUESTIONS Strongly Agree/Agree Disagree/Strongly Diagree Neutral