Development of a Health Care Social Stories App

Background: The communication impairments and sensory sensitivities of patients with autism spectrum disorder (ASD) can make medical care particularly challenging (Bultas et. al, 2016). Social stories, short stories that use text and pictures to break down processes into smaller, understandable steps, are one way to mitigate the communication difficulties. They help patients better understand what to do in specific situations, such as getting a flu shot. Social stories may reduce patients’ disruptive behaviors (Scattone et al., 2002), ease anxiety, and set expectations about what will happen.

Objectives: We aimed to develop a free, publicly available mobile application that contains social stories about the experience of accessing care at Boston Medical Center to better prepare our patients with ASD for upcoming encounters.

Methods: We conducted a review of the available social story apps, and found that many either were not free, or did not focus on medical encounters. To better understand the specific needs of our patients and families, we involved parents who are members of the Parent Leadership in Autism Network (PLAN) at BMC. In addition to parent and patient feedback, we collected perspectives from the Steering Committee of the Autism Friendly Initiative, which includes stakeholders from nursing, security, and developmental and behavioral pediatrics among other departments. A BCBA also provided guidance on the language for the social stories. Our needs assessment informed the design of the app.

Results: The app contains seven social stories including measuring height and weight, measuring blood pressure, getting a shot, getting blood drawn, doing a physical exam, visiting the dentist, and navigating to a doctor’s office on the campus of Boston Medical Center (BMC). The social stories that describe medical procedures are illustrated using Picture Exchange Communication System (PECS) images, since this is a format often used by education professionals, and would likely be familiar to many of our patients.

For the social story about navigating to the doctor’s office, we wanted to enable patients to preview the experience of coming into Boston Medical Center. This story has photos of actual locations on campus, such as building exteriors, building lobbies, individual floor hallways, and each department’s front desk and waiting area. To customize the experience further, the social story allows the user to select the desired starting point, building, and department. Then, each step is its own screen that has a descriptive sentence paired with a picture, enabling the patient to virtually “walk” from the parking lot, through elevators and corridors, all the way to the actual exam room. After each step there is a “reward screen” that depicts a rotating star to commend the user for completing the step to make for a positive and engaging user experience.

Conclusions: Social stories are valuable in supporting patients with ASD with preparing for medical encounters. Our app is designed to increase access to social stories, and to enable our patients to be better prepared for medical encounters, and ideally to have a better experience.