Barriers to Behavioral Healthcare for ASD
Project Dates
2024 – 2025
Funding Source
Center for Pacific Innovation, Knowledge, and Opportunities (PIKO), NIH/NIGMS
About
The rate at which children are being diagnosed with ASD has climbed dramatically, from 1 in 110 in 2006 to about 1 in 36, currently. And while Autism Spectrum Disorder, or ASD, can be diagnosed reliably in children as young as 18 months, most children in Hawaiʻi are not diagnosed until much later. “Why the delays in services?” is a question our study endeavors to answer. Many caregivers experience barriers to seeking a diagnosis of ASD and related services for a multitude of reasons.
We will employ a cross-sectional research design and over 11 months, we plan to meet with (N = 280) caregivers of children suspected of having or diagnosed with ASD within the past 5 years. Children with comorbidities or co-occurring conditions will also be eligible to participate as long as ASD is the primary diagnosis. Each participant will complete a demographics questionnaire, and one to three BBHA questionnaires, depending on where in the help-seeking process the person is.
The BBHA is a set of three surveys designed to assess barriers to accessing healthcare for caregivers of children with autism at three points in families’ help-seeking journeys; when they first noticed developmental differences up to when they met with a provider about their child (BBHA-1); when seeking a diagnosis of ASD from a specialist (BBHA-2); and when seeking treatment (BBHA-3). The BBHA questionnaires were developed during the 2023 summer and their content validities established using the Delphi method. Data will be analyzed using Exploratory Factor Analysis (EFA) and Structural Equation Modeling (SEM).
Aim 1: Establish the reliability (internal consistency) and validity (construct) of the Barriers to Behavioral Healthcare for ASD (BBHA; Stern and Murphy) questionnaires.
Aim 2: Identify relationships among variables that predict age of first concern, age when diagnosed, and age of treatment for ASD in a medically underserved and diverse population on Oʻahu.
Principal Investigator
Team
Website
Under development
Partners
- Hilopaʻa Family to Family
- Hawaiʻi Pacific Health
- University of Hawaiʻi at Mānoa
- Chaminade University of Honolulu Assessment Ctr.
- State Council on Developmental Disabilities
- Department of Health, DD Division
- Assets School
- Community Service Providers
- Oʻahu Speech
- Bayada
- Malama Pono Autism Center
- Mau Loa Learning
- Hawaiʻi Childrenʻs Action Network
- Hawaiʻi Autism Foundation
- Special Parent Information Network (SPIN)