Support for Caregivers of a Child with an Autism Spectrum Disorder Diagnosis

Abstract

Purpose: Caregivers of children with autism spectrum disorder (ASD) experience higher levels of anxiety and depression than those who do not care for a child with ASD. Despite this, pediatric primary care lacks established interventions to support these caregivers. This quality improvement project aimed to provide resources and support to caregivers of children diagnosed with ASD at Kids First Pediatrics. Methods: From August 2024 to February 2025, the quality improvement project was implemented in three phases. During the preparation phase, staff received training, a system was established within the electronic medical record system for caregiver identification, and a REDCap survey with PHQ-9 and GAD-7 screenings was developed. A caregiver resource document listing support organizations and counseling opportunities was also created. In the execution phase, intake staff identified caregivers and guided them to complete the screening tools via a QR code during their child’s visit. Results were securely recorded in REDCap. Caregivers who scored above the moderate threshold for either anxiety and/or depression were followed up with to ensure they had an established primary care provider. Those without one received local provider recommendations, and all caregivers received the resource document. In the final month, data analysis was completed, findings were reported to the clinic owner, and the continued integration of caregiver support was promoted. Results: The results from the 14 caregivers screened indicated a need for enhanced support for caregivers of children with an ASD diagnosis. Caregivers had an average PHQ-9 score of 19, indicating moderate to severe depression, and an average GAD-7 score of 15, reflecting severe anxiety. Additionally, 100% of caregivers agreed that they would benefit from resources today and support from their child’s pediatrician. Implications for Practice: This project underscores the need for enhanced caregiver support in pediatric primary care, as reflected by anxiety and depression screening results and subjective caregiver feedback. Future efforts should prioritize the development of resource documents and promote support by stakeholders. Additionally, supporting caregivers and collaborating with community organizations can improve caregiver well-being, childcare outcomes, and the overall awareness of caregivers’ mental health.