468 - Support Needs for Families and Primary Care Providers of Children with Suspected Developmental Delays

The number of children diagnosed with autism spectrum disorder and developmental delays (ASD/DD) is increasing. Children suspected to have these diagnoses may be referred to a Developmental and Behavioral Pediatrician (DBP) for evaluation, but often endure long waitlists due to a shortage of DBP providers. Support needs for families and providers during this waiting time has not been well-described.

Objective:

To describe support needs for families and their primary care providers when ASD/DD is suspected.    

Design/Methods:

In this qualitative study, 10 parents of children with autism and 10 primary care providers (MDs and NPs) were recruited through convenience sampling. Families were recruited by a community-based parenting organization and contacted via email with follow-up by phone call for non-responders. Two families completed the email survey and 4 completed semi-qualitative phone interviews. Nine providers representing private and hospital-based practices in urban and suburban areas within Rochester, NY responded via email. Surveys were coded and major themes were identified.

Results:

Nine of 10 providers and six of 10 families responded. Major themes from families reflected both positive and negative interactions with providers. A repeated theme from families was the perception that providers were afraid to say the word autism. They also described a lack of needed resources around parent mental health (Fig. 1). Major themes from providers included discomfort discussing social-emotional delays and concerns for autism with families as well as a lack of resources to provide to families (Fig. 2).


Conclusion(s):

Families and providers expressed parallel concerns, particularly with discomfort in conversations around suspected ASD/DD and the need for more resources. Families request more guidance from providers about next steps, more explicit information about whether autism is a concern, and mental health supports for parents. Providers need more support in counseling about suspected autism and social/emotional delays. These results highlight there are many support needs on both the family and provider side while waiting for DBP evaluation.