Autism Friendly Training Takes Off

December 15, 2015

Children with Autism Spectrum Disorder (ASD) require increased health care services compared to children with other Special Health Care Needs. However, they often have difficulty accessing appropriate care for various reasons. At Boston Children's Hospital (BCH), anecdotes of delayed or missed care are common for our patients with ASD, due in part to parent concerns about their child's ability to tolerate hospital visits. To address this issue, the BCH Autism Spectrum Center launched an "Autism Friendly Hospital" initiative to support patients with ASD in the hospital setting. One component of the initiative is staff education and training for non-clinical personnel. These staff members are often the first contact for patients with ASD and their families, but may not be familiar with the symptoms of ASD or strategies to help patients tolerate visits.

Providers from the Autism Spectrum Center developed a project led by Jennifer Lucarelli MD, a 2nd year DBP fellow at Boston Children's Hospital, along with Laura Weissman MD, a DBP faculty member, and two Staff Psychologists, Leah Wildenger Welchons PhD BCBA and Nancy Sullivan PhD. Through a grant from the BCH Program for Patient Safety and Quality, the initiative aims are to deliver multimodal trainings to non-clinical personnel and evaluate the effect on staff knowledge, comfort and competency in working with patients with ASD.

We identified 8 hospital departments most frequented by patients with ASD including: Neurology, Developmental Medicine, Psychiatry, Audiology EEG, phlebotomy and some of the BCH satellite location multispecialty clinics. First, participants complete an online module with basic ASD knowledge. This is followed by an in-person training tailored to specific departments after a thorough online and in-person needs assessment. The trainings include video, case discussion, and reflection delivered by a multidisciplinary team of ASD-trained clinicians (including Developmental Pediatrics, Psychology and Child Life). Pre- and post-training assessments of staff knowledge, behaviors, and attitudes are collected via electronic surveys. We are also aiming to capture the more distal outcome of family access to and experience of care though a survey that was developed in the Autism Spectrum Center, the Autism Barrier to Care Survey. This survey asks parents about experiences obtaining recommended care as well as their overall hospital experience. As it is delivered to families on a regular basis, we plan to use this measurement to follow improvement in patient and family hospital experience over time.

To date, 11 one-hour trainings have been conducted for 145 staff members across six of eight target departments. On a pre-survey Needs Assessment, 90% of staff believed the training would be helpful. Preliminary data shows a significant change in scores (p < 0.05) on each of 6 questions related to self-reported ASD knowledge and use of strategies intended to help children with ASD adjust to the hospital. Improvement, but not significant change, was seen on two questions related to personnel comfort managing challenging behaviors. Significant change was also seen in correct responses to three knowledge-based questions regarding ASD. On a Program Evaluation, 87% reported they would be able to apply training material "immediately" to their role.
Since the inception of this project we have refined our materials as we move through training cycles based on personnel feedback and department needs. Trainings have become increasingly collaborative and we have provided follow-up consultation in some departments when needed. These sessions have incited an ongoing dialog about concerns servicing this patient population and methods to improve care in the long-term.

We hope to demonstrate the feasibility of this educational model and disseminate the curriculum more widely throughout our institution and potentially to other institutions. Ultimately, we hope this quality improvement project will increase the capacity of hospital personnel to deliver appropriate care to ASD patients, and improve the patient and family care experience at BCH and beyond.