Editor’s Note: The Children’s Hospital of Philadelphia (CHOP) Patient and Family Engagement Team and Outpatient Services Leadership was named 2016 John Q. Sherman Award for Excellence in Patient Engagement winner for their Buerger Center project that included patient and family voices in the total project design: Start to finish. CHOP paid special attention to the needs of children with Autism Spectrum Disorder (ASD) because of the escalating numbers of children diagnosed with ASD. To learn more about the CHOP Buerger Design Center, read their complete Sherman Award nomination.
Incorporating patient and family voices is key to improving patient engagement
As the parent of a 19-year old son diagnosed with Autism Spectrum Disorder (ASD), I know how difficult it can be to navigate the hospital environment. I have spent countless hours just trying to get my son his medical care without having tantrums due to the anxiety provoking environment of a hospital. Some of the difficulties in this setting for children with ASD are the loud noises, large buildings, the unpredictability, lighting and lack of activities they can do especially during a long wait for an appointment.
When The Children’s Hospital of Philadelphia (CHOP) announced they were going to build a new Outpatient Building that is connected to the hospital, they made sure families were included from start to finish. Families were included in the design plans and provided feedback every step of the way from the first drafts of the floors of the building to the official opening of The Buerger Center in July 2015. Buerger is an innovative building that includes waiting areas with “pods” that are meant for different types of play. Each floor has three pods – active, quiet, and digital.
A Growing Need for Specialized Facilities
In 2015, there were 17,821 visits by children with an Autism Spectrum disorder (ASD) to CHOP locations. The latest prevalence rates of ASD are 1 in 68. This means our pediatric healthcare environments will continue to receive an influx of children with this diagnosis. In fact, the latest CDC report found that New Jersey has the highest prevalence rate of ASD in the country with 1 in 41 children being diagnosed. CHOP has locations in New Jersey and is home to the Regional Autism Center and the Center for Autism Research.
These increasing numbers presented a huge opportunity to make sure the Buerger Center was created in partnership with Autism families–people who know first-hand how critical medical care is for their child–yet find it difficult to access because typical environments can be difficult to manage for children with ASD. The CHOP team knew that to create this Autism friendly environment, we needed to rely on our experts – our ASD family partners. We are fortunate to have a group of family partners who have a child with ASD and have volunteered to provide feedback to the hospital. The Autism Family Partners are part of CHOP’s larger Family Partners Program which is comprised of many sub-specialty groups that collaborate with staff across the hospital to provide the perspective and voice of all of our patients and families.
A Continuous Partnership
It is important to note that the process of partnering with families to create and maintain an inclusive environment is a continuous one. We continue to learn from our families and are making additions and improvements as more outpatient departments are moving in to Buerger. The feedback and knowledge we consistently receive from our ASD family partners has been invaluable as more floors are designed and built.
For example, many of our families told us how much they loved squishy floor tiles that changed color when you step on them. They also do not make noise which is good for children with ASD who often have sound sensitivities. These tiles originally were only located in our “active” pods and not in our quiet area. However, our ASD family partners pointed out that quiet areas can include play. Now, the floor tiles are going in every waiting area on every floor of the building.
The process is not always easy as the hospital needed to create an outpatient building that serves the needs of many different patient populations. It is a delicate balancing act to make sure there are areas of the building that are fun for all kids, in addition to making it accessible and comfortable for children with ASD. We are achieving this by including families throughout the design process.
Going a Step Further
The Autism Family Partners are embarking on another project in the Buerger Building. As they walked through the building they noted all of the great features and interactive opportunities that are in there for ASD kids. One parent said, “This is great. Now you need to create a tip sheet and give it to families before their visit so they know where the Autism-friendly areas are and where the active ones are too so they can avoid them if their child can’t tolerate the loud noises.” This feedback was taken seriously and will be put into action.
The Family Partners are taking it to the next level by meeting with CHOP’s ASD clinicians to develop a guide for families that will include helpful strategies. The guide will help families navigate the building and will have information about playful, ASD-friendly interactives that can be used as a positive behavioral support or reward for a child. We believe that not only can we get our ASD patients the healthcare they need but can do so in a comfortable, therapeutic and safe environment.
CHOP has a long-standing history of engaging patients and families in all of the work they do. The Buerger Building is one more example in CHOP’s long standing history of Family-Centered Care, where partnering with families to include their voices in our work is how we help to continually meet the needs of patients and families.
