Youth with ASD have unique sensory, emotional and communication needs that can make healthcare experiences challenging. Because these experiences are challenging, families of youth with ASD may delay or avoid seeking healthcare until problems are more complex or serious. This can lead to greater health difficulties and higher healthcare costs.
Our goal is to create the best possible healthcare experiences for youth with ASD, their families and their healthcare providers. By doing this, we hope to increase families' access to high quality care and improve the health of youth with ASD.
We started our work by interviewing staff and families of youth with ASD about their experiences around the time of surgery and about what strategies could be helpful in improving their experiences. We summarized our results in the video below.
As you may notice in this video, healthcare providers play an important role in shaping the experiences of youth with ASD and their families. Research and opinions from experts (including families) suggest that the best possible experiences for youth with ASD and their families comes when healthcare providers partner with families to provide care that is empathic, coordinated and tailored to the individual needs of each child. The approach to care that can create the best experiences can be summarized with the acronym PACE.
P = Partnering with families | A = Assessing needs and tailoring care | C = Coordinating care | E = Expressing empathy
We know that healthcare providers want to create the best experiences possible for youth with ASD and their families, but sometimes feel unprepared to do so. The aim of BALANCE is to provide healthcare providers with the knowledge, skills and support to feel comfortable providing PACE-consistent care for youth with ASD and their families.