Development and Evaluation of Educational Materials for Pre-hospital and Emergency Department Personnel on the Care of Patients with Autism Spectrum Disorder
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- McGonigle, J.J., Migyanka, J.M., Glor-Scheib, S.J. et al. J Autism Dev Disord (2014) 44: 1252. doi:10.1007/s10803-013-1962-0
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With the rising prevalence of patients with autism spectrum disorder (ASD), there has been an increase in the acute presentation of these individuals to the general health care system. Emergency medical services and emergency department personnel commonly address the health care needs of patients with ASD at times of crisis. Unfortunately, there is little education provided to front-line emergency medical technicians, paramedics and emergency nurses on the characteristics of ASD and how these characteristics can create challenges for individuals with ASD and their health care providers in the pre-hospital and emergency department settings. This paper describes the development of educational materials on ASD and the results of training of emergency medical services and emergency department personnel.
KeywordsEmergency medical servicesEmergency nurseEmergency departmentAutism spectrum disorderEducation
The rising prevalence of autism spectrum disorder (ASD) has led to increased awareness that individuals with this complex neuro-developmental condition have multifactorial medical needs that extend beyond the care of specialists (Venkat et al. 2012). Patients with ASD have been found to utilize general health care resources at a higher level than patients without these conditions (Gurney et al. 2006). It is estimated that in the United States, the annual cost of care for individuals with ASD will rise over the next ten years from $60 billion to $200–$400 billion (Autism Society 2013a, b). As a result, it is clear that the health care system and medical providers of all types will need to become more educated on the needs of individuals with ASD.
For most patients requiring acute care, the emergency department serves as the gateway to the health care system. In 2010, the last year on which statistics are available, there were 130 million emergency department visits in the United States; on average, 20 % of the US population visits an emergency department annually (National Center for Health Care Statistics 2013). Emergency medical services represent a significant source of patients presenting to the emergency department. As of 2010, 16.3 % of all emergency department visits came through ambulance transport (Centers for Disease Control and Prevention 2010). While emergency medical services and emergency department personnel are expected to care for any patients who require acute care, there is only minimal literature on the subject of ASD and its impact on caring for individuals with this condition in the pre-hospital and emergency department settings (Shellenbarger 2004; Scarpinato et al. 2010; van Olejnik 2004). The Autism Society, recognizing this knowledge gap, began the Safe and Sound Initiative in 2005 to create training materials for first responders and offers education sessions for these professionals (2013). However, the dissemination of existing didactic and practical training is fragmented, and measures of the impact of these educational efforts are not available. In addition, to our knowledge there are no didactic and practical training curricula for emergency department nurses and other emergency department personnel on the characteristics of autism spectrum disorder, their impact on patients and health care providers in the pre-hospital and emergency department settings and concomitant health care conditions that can cause patients with ASD to require acute care. As a result, survey data suggest that families of patients with ASD find the provision of emergency department and general health care challenging, dissatisfying and often burdensome, both emotionally and financially (Kogan et al. 2008).
Our objective was to develop structured didactic materials and training sessions for emergency medical services and emergency department personnel on ASD and to evaluate their effectiveness in imparting knowledge on autism spectrum disorders and improving the subjective comfort and awareness of these health care providers on how to aid ASD patients in crisis situations. We describe the development and content of our didactic materials, the structure of our presentations, drawing on these materials, to emergency medical technicians, paramedics and emergency nurses and the results of pre- and post-training surveys in the respondents with regard to knowledge acquisition about and comfort with caring for individuals with ASD.
In describing the steps in developing the didactic materials used in our training programs, we will discuss the needs assessment used to determine what should be in the training materials, the construction of our team to ensure that relevant areas were elucidated, the nature of our didactic tools and training sessions, and the analytic process of determining the effectiveness of our program.
Needs Assessment and Team Construction
A State survey of individuals with ASD and their families showed that the education of general health care providers on the care needs of these patients was an important priority. In this survey, families of and individuals with ASD relayed that it was their common experience for emergency medical services personnel to not understand the communication and behavioral impairments seen in patients with this condition. As a result, individuals with ASD, in some circumstances, had received aggressive pharmacologic sedation or physical restraints due to misunderstandings with emergency medical services personnel, and even, in extreme cases, been arrested for misunderstood behaviors. Families of and patients with ASD all related the common experience that emergency department and general health care providers had little knowledge of the characteristics of this condition and, as a result, were often ineffective in providing necessary care (Pennsylvania Department of Public Welfare 2011).
As a result of this needs assessment, the regional coordinating center under a State grant brought together specialists in the outpatient care of ASD (PhD Psychologist and Program Coordinator with a Masters in Social Work), the special education needs of this population (PhD and Ed.D Special Education Professors), and emergency medicine (MD Board Certified in Emergency Medicine). This team was tasked with devising didactic materials to address the areas of concern identified in the needs assessment and to develop opportunities to train emergency medical services and emergency department personnel on the requirements of patients with ASD in the acute care setting.
Preparation of Didactic and Training Materials
In preparing didactic and training materials for emergency medical services and emergency department personnel, the team categorized the needs of these groups into four large areas. First, there was a need to impart knowledge about the nature of autism spectrum disorder—the epidemiology of this condition and the defining impediments seen in communication, social interaction and repetitive behaviors. Second, the group saw the need to dispel ‘myths’ about individuals with ASD. These misperceptions, conveyed by the emergency physician to the group, included that patients with ASD have an inability to communicate verbally, can be readily identified by typical behaviors on short-term observation and react in a readily identifiable pattern to acute stressors. Third, the team wanted to educate acute care providers on the medical issues associated with ASD that might bring these patients to the attention of emergency medical services and the emergency department. These medical issues included, non-exclusively, functional and organic gastrointestinal conditions, seizures, associated (rather than causative) psychiatric disorders, catatonia and self-injurious behaviors (Venkat et al. 2012). Fourth, the group wished to present an approach to effectively acquire a history of the acute presentation, conduct a physical examination, obtain laboratory and radiographic testing and initiate necessary treatments taking into account the characteristics of ASD. This practical part of the training would also provide recommendations on triage, environmental factors that can be disturbing to a patient with ASD and sedation when appropriate.
To cover these areas in a time efficient manner, the team created both a training manual and DVD with dramatized case examples and commentary from individuals with ASD and their family members. Given the differences between pre-hospital and emergency department challenges and care, separate training manuals and DVDs were created for each audience (see Supplementary Materials, comprising example sections from both training resources, accompanying this article). Due to time constraints to cover relevant material and a desire, based on the above referenced needs assessment (Pennsylvania Department of Public Welfare 2011), to focus upon personnel who are involved in first interactions with ASD patients, the team decided to develop initial training materials for emergency medical services and emergency nursing personnel with future efforts targeting emergency physicians and other health care professionals.
Presentations and Analysis of Educational Effectiveness
To disseminate the educational materials developed by our group, all members investigated relevant conferences and venues for the training of emergency medical technicians, paramedics and emergency nurses. Three regional conferences, two for emergency medical services personnel and one for emergency nurses, invited the training group to present their materials. These conferences offered different length sessions and audiences for the training. The first emergency medical services conference requested an in-depth three hour session inclusive of presenting all materials, further lectures by the training group and case discussions. The second emergency medical services conference scheduled a one-and-a-half hour seminar to allow presentation of the relevant DVD and example materials from the pre-hospital training manual. The third conference was the annual meeting of the State emergency nurses association with a one hour session allowing an abbreviated presentation of materials from the relevant DVD and training manual and discussion by the training staff.
To evaluate the effectiveness of these educational efforts, we obtained IRB approval for consenting conference participants and administering identical pre- and post-intervention surveys. The survey included demographic characteristics of the respondents and responses to questions on knowledge about ASD as relates to emergency care and comfort with responding to acute crises in patients with autism spectrum disorder. The survey responses were structured as a five-point Likert scale to allow analysis of improvement or lack thereof in knowledge acquisition and subjective assurance in caring for individuals with ASD at times of crisis.
The surveys were coded to allow anonymous pairing of the trainees’ responses pre- and post-intervention. We analyzed the significance in change in responses using a single-tailed paired t test and whether demographic characteristics or presentation mode affected outcomes using an ANOVA test, with a level of statistical significance set at p ≤ 0.05.
Characteristics of surveyed training participants (N = 110)
Emergency medical technician
Other (e.g., LPN, EMT student, etc.)
Level of education (%)
Some graduate or professional school
Graduate or professional school
Prior interactions with persons with an autism spectrum disorder (% Self-reported)
Prior training on autism spectrum disorders (%)
For subjects with prior training, number of hours previously received (mean, range)
Pre- and post-training survey questions and response analyses divided by knowledge acquisition queries and respondent subjective comfort in management of patients with ASD queries (1 = Strongly disagree, 2 = Disagree, 3 = Not sure, 4 = Agree, 5 = Strongly agree)
Anticipated direction of responses pre- to post-training
Mean pre-training response
Mean post-training response
Statistical significance for change in anticipated direction of response (p ≤ 0.05 considered significant)
Percentage of respondents with pre-training knowledge or subjective comfort deficits (refer column 2 for standard) (N = 110)
Percentage of respondents with pre-training knowledge or subjective comfort deficits (column 6) that moved to knowledge or subjective comfort (refer column 2 for standard) (N = 110)
Statistical significance for change in percentage of respondents that moved from knowledge or subjective deficit to improvement (p ≤ 0.05 considered significant)
Knowledge acquisition queries
A person with autism can be identified by his/her physical characteristics.
People with autism are a heterogeneous group, and the characteristics of autism look different in each person.
Autism causes mental Illness.
A person with autism is easily identified by his/her behavioral characteristics.
All persons with autism respond to the same strategies and techniques to communicate.
Characteristics of autism include difficulty with social interactions, communicating with others, repetitive behaviors and sensory processing difficulties.
For a person with autism, hand flapping can be a form of communication.
Restraining a person with autism who is yelling, screaming and/or biting themselves should be the first line intervention to gain control of the situation.
Most people with autism are non-verbal and have limited ability to talk.
During periods of severe stress, people with autism may become aggressive towards others or injure themselves.
A person with autism has little interest in their environment and limited awareness of sensory stimuli such as sights, sound, smells, touch and taste.
In most cases, people with autism have an understanding of cause and effect and comprehend the consequences of their actions
A person with autism that is anxious responds best when using distractions and when there are multiple speakers giving directions on ways to relax.
A person with autism may purposefully be rude by mimicking what you say or repeat lines from TV or videos.
Autism is a disorder that is most common in the Caucasian community.
Regardless of the communication and language ability of a person with autism, best approaches usually require detailed explanation, visuals and gestures and involve multi-step directions.
Using a hands on approach (grabbing or restraining) a person with autism during a crisis situation may create fear, anxiety and resistance.
A person with autism has the ability to handle increased anxiety in a manner that does not appear to affect their mood or interactions with others.
Overall knowledge acquisition
Subjective comfort queries
I am comfortable interacting with a person with autism.
I would know how to respond to a person with autism in a medical crisis.
I would know how to respond to a person with autism in a mental health crisis situation.
I am familiar with other medical conditions that are often associated with autism.
I am confident in my ability to approach and communicate with a person with autism.
I am confident that I could recognize the characteristics and behaviors of a person with autism.
Overall subjective comfort
To our knowledge, this is the first report on efforts to educate emergency medical technicians, paramedics and emergency department staff on the care requirements of patients with ASD in the acute setting. Based on an initial evaluation of our efforts from survey data pre- and post-intervention, it appears that we have developed didactic and training materials that increase the knowledge and comfort among the target respondents with regard to ASD, even with their adaptation to the logistical requirements of the educational venue. Our ultimate goal, one that is shared by the State funding agency, is to incorporate these DVDs and manuals into the State curriculum for emergency medical services providers and be accredited for continuing education units for emergency nurses and other emergency department staff. The training manuals include post-utilization questionnaires similar to the ones used in this study to allow the individual practitioner to determine how well they have assimilated the materials (see Supplementary Materials).
In evaluating the effectiveness of our training, it was important to look at the respondents from both an objective and subjective perspective. The pre-training survey data shown in Table 2 reveals that the mean responses with regard to comfort in assessing and treating patients with ASD were quite low. This fits with the previously cited studies by Kogan et al. (2008) and the Pennsylvania Department of Public Welfare (2011) that showed individuals with ASD and their families found encounters with the general health care system to be challenging. In this context, mere transmission of objective knowledge can be viewed as a necessary but not sufficient factor in allowing emergency medical services and emergency department personnel to care more effectively for patients with ASD. Similarly, subjective assurance without objective knowledge may create a false sense of ease in caring for this challenging patient population.
A limitation of both our educational materials and the survey data in this study is that the number of training recipients to date is relatively small. In addition, the true evaluation of educational interventions comes in a long-term assessment of change in practice. When speaking of thousands of emergency medical services agencies and emergency departments, this cannot be readily assessed in a meaningful way until our training or variations on it are used both in a more disseminated manner and with reinforcing sessions over time. One factor that suggests that the didactic and training materials we have developed can be used in a relatively broad manner is the ANOVA results that revealed that neither type of presentation nor demographic, professional or educational factors impacted on the effectiveness of our efforts. However, to more definitively establish the ultimate benefit of our didactic materials, follow up studies should be completed to evaluate long-term improvement in the treatment of ASD patients in the pre-hospital and emergency department settings after training relevant personnel.
We would suggest that there are three means by which these didactic and training materials can be disseminated to the relevant acute care providers. First, health care and other professionals that specialize in the treatment of individuals with ASD have the opportunity to share these training materials with their local emergency medical services agencies and emergency departments. In our presentations, we received numerous follow-up requests for local training, suggesting emergency medical technicians, paramedics and emergency department nurses are receptive to such efforts. Second, we plan on evaluating whether a webinar type interface can provide a similar degree of knowledge dissemination and subjective assurance on the care of individuals with ASD in the acute setting. Finally, incorporation of these materials into curricula and continuing education activities for emergency medical services and emergency nurses would allow their widespread use, especially if sponsored by accrediting agencies.
We have developed a series of educational materials targeted at emergency medical services and emergency department personnel on the characteristics of ASD, the challenges this condition poses to patients and their health care providers in the pre-hospital and acute care settings and methods for improving the interaction between the same during times of crisis. Our data analysis pre- and post-intervention suggests that these materials and our training sessions are effective in accomplishing the above objectives. The next steps will be to disseminate these educational products to a variety of audiences and institutions and evaluate their long-term effectiveness in improving emergency care of individuals with autism spectrum disorders.
This project was funded through a grant from the Bureau of Autism Services, Department of Public Welfare, Commonwealth of Pennsylvania to the Western Regional Autism Services, Education, Resources, Training (ASERT) Collaborative at the Western Psychiatric Institute and Clinic of UPMC.