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Published on: July 31, 2017
Primary Care Pediatricians' Perspectives on Autism Care
Nicole Hamp1, Sarah L DeHaan1, Celina M Cerf1
1Department of Pediatrics, Medical School, University of Michigan, Ann Arbor, Michigan.
Insights
Pediatric providers need better support for identifying and managing autism spectrum disorder (ASD) in toddlers. Enhancing communication, referral systems, and family support is crucial for early intervention.
Area of Science:
- Pediatric primary care
- Autism Spectrum Disorder (ASD) research
- Healthcare provider education
Background:
- Primary care providers (PCPs) are pivotal in early identification of autism spectrum disorder (ASD) in toddlers.
- Current systems present challenges in ASD screening, referral, and management within pediatric primary care settings.
- Understanding PCP experiences is essential for developing effective supports and services in the medical home.
Purpose of the Study:
- To explore pediatric primary care provider (PCP) experiences and needs regarding the identification and management of autism spectrum disorder (ASD) in toddlers.
- To inform the development of improved supports and services for ASD within the primary care medical home model.
- To identify key areas for enhancing PCP capacity in managing ASD.
Main Methods:
- Qualitative study involving semistructured interviews with 28 pediatric primary care providers (PCPs).
- Interviews explored current screening, referral, and management practices, communication with parents, and emotional experiences related to ASD.
- Grounded theory analysis was used by a multispecialty research team to identify recurrent themes in interview transcripts.
Main Results:
- PCPs face challenges throughout the ASD identification and management trajectory, including parental perception, navigating referral systems, and provider emotional investment.
- Themes identified include the "parent lens" in ASD identification, the "autism labyrinth" of referrals, provider disempowerment, and the "black box" of long-term management.
- Disparities in care were linked to practice-based factors and parent activation, highlighting inequities in the current system.
Conclusions:
- Targeted improvements are needed to increase PCP capacity and confidence in discussing ASD concerns with families.
- Enhancing referral pathways to trusted, accessible diagnostic evaluations is critical for timely intervention.
- Strengthening family activation and capacity to engage with ASD evaluation and treatment services is essential for improved outcomes.
Objectives:
We aimed to explore pediatric primary care provider (PCP) experiences and needs around identification and management of autism spectrum disorder (ASD) in toddlers for the purpose of planning improved supports and services for ASD in the medical home.
Methods:
We recruited 28 PCPs to participate in semistructured interviews via Zoom. Probe questions elicited opinions about current screening and referral procedures, experiences obtaining services for patients, effective communication with parents, physician emotional experience when introducing ASD concerns, practice-based sources of disparities, and larger needs for ASD management in the primary care setting. Interview transcripts were analyzed qualitatively by a multispecialty research team for recurrent themes using grounded theory analysis.
Results:
Participants were 89% women, ranging in clinical experience from <1 year to >27 years, representing 8 diverse pediatric primary care clinic sites at a Midwest academic medical center. Dominant themes relating to PCPs' cognitive, emotional, and environmental experience of caring for patients with ASD were identified, which reflected the trajectory of ASD identification (the parent lens; the "A" word), referral (the autism labyrinth; provider disempowerment; parent activation as a source of inequities), and long-term management (the "black box"; provider emotional investment).
Conclusions:
Existing literature and results from this study suggest a need for targeted improvements in primary care to: (1) increase PCP capacity and confidence in communicating concerns of ASD with families; (2) refer for timely diagnostic evaluations in trusted and easy-to-navigate care systems; and (3) increase family activation and capacity to follow up on ASD evaluation and treatment services.
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