Co-Developing and Piloting Culturally-Responsive Informational Materials About Autism for Families of Young Children: Employing a Train-the-Trainer Implementation Model Within a Nonprofit Setting
Phase: NA
Conditions: Autism, Development Delay
Sponsor: University of Washington

 
 
 
 
 
 
Title: Co-Developing and Piloting Culturally-Responsive Informational Materials About 
Autism for Families of Young Children: Employing a Train-the-Trainer Implementation Model 
Within a Nonproﬁt Setting 
NCT number: NCT06314438 
Date: 3/6/2025 
 
 

Study Protocol 
Background: 
Access to early, evidence-based autism-speciﬁc treatment can profoundly improve long-term 
outcomes for children with Autism Spectrum Disorder (ASD). However, current estimates reveal an 
eight-month to three-year gap between caregiver ﬁrst concerns about their child's ASD-related 
behaviors and receipt of ASD-speciﬁc services. This prolonged time-period between caregiver ﬁrst 
concerns and receipt of ASD-speciﬁc services is characterized by elevated parenting stress, 
increased child behavioral challenges, and reduced quality of life, even compared to families of 
children with non-ASD developmental concerns. Unfortunately, culturally and linguistically diverse 
(CLD) communities experience lengthier time-periods between ﬁrst concerns and receipt of 
services, report increased diMiculty accessing timely diagnostic and treatment services, and 
ultimately experience worse health outcomes compared to White communities.  
Objectives: 
The investigators partnered with Mother Africa, a local non-proﬁt organization, to 1) co-design 
culturally-responsive caregiver-focused educational materials to support CLD families with young 
children who have social communication delays or ASD and 2) develop a novel route for 
dissemination of information and materials within non-proﬁt organizations, which are often the 
preferred entry-point for accessing healthcare information and services for underserved 
populations, rather than traditional medical facilities. The educational materials aim to support 
caregiver and child well-being by increasing caregiver knowledge and use of ASD speciﬁc parenting 
strategies as well as increasing caregiver awareness and use of local ASD resources. This research 
has the potential to eMect programmatic changes in the services and settings available to support 
CALD communities during the early years of a child's ASD condition and thereby improve child and 
caregiver outcomes. 
Methods/Design: 
Participants included 6 non-specialist providers working at a local non-profit organization and 35 
caregivers.  Caregivers were affiliated with the non-profit organization and met the following 
inclusion criteria: has a child who screened at likelihood on the Ages and Stages Questionnaire; an 
speaks one of the following languages: Arabic, Mai Mai, Swahili, French, Tigrinya, Dari.  
 
This project utilized a three-stage development and implementation process informed by the 
literature on bridging cultural adaptation with implementation science to ensure that our end-
product (i.e., culturally-responsive caregiver education materials) is relevant for consumers and 
feasible for deployment. Co-design methods (e.g., treating community members as equal 
collaborators in the design process, synthesizing feedback from target users into actionable 
insights) were used to ensure that caregivers, ASD specialists, service providers, and program 
supervisors are actively involved in the design of the curriculum and its implementation needs.  
Stage 1: For the co-design phase, a working group of caregivers, Mother Africa supervisors (i.e., 
program managers), Mother Africa providers (i.e., administrators of developmental screeners who 
are matched to the culture and language of their clients), and ASD specialists were assembled and 
met to culturally adapt existing caregiver-education materials for a total of eight co-design sessions 
over 6 months. Stage 2: Using a web-based tutorial, Mother Africa staM were taught to deploy the 

culturally-adapted curriculum. Stage 3: Providers piloted the curriculum to groups of caregivers. 
Supervisors, providers, and caregivers completed self-report surveys during Stages 2 and 3 to 
provide feedback on the cultural adaptation, implementation, and caregiver and child outcomes. 
The current study registered on clinicaltrials.gov focuses only on this third stage of our project (i.e., 
the pilot feasibility trial). 
Statistical Analysis Plan: 
The primary goal of our analyses was to measure change in caregiver knowledge and service usage 
before and after participating in our program. As such, paired samples T-tests were used to test for 
diMerences before and after implementation of the Family Care Project on the following 
dimensions: StaM Competence in Assisting Families with Children at-autism Likelihood Survey 
(self-report); The Maternal Self-EMicacy Scale Questionnaire; and Caregiver Knowledge and Use of 
Behaviors that Support Children at autism-likelihood Survey. 
Additional, secondary surveys were analyzed using descriptive statistics for Likert scale measures 
and those using discrete variables (i.e., received/not received), including StaM Competence in 
Assisting Families with Children at-autism Likelihood Survey (self-report), The Maternal Self-
EMicacy Scale Questionnaire, Caregiver Knowledge and Use of Behaviors that Support Children at 
autism-likelihood Survey, Current Services Utilized by Families to Support Children at autism-
likelihood Survey, and Family Care Project Feedback Survey of Implementation Properties. All 
surveys except one were analysed using mean and standard deviation. Current Services Utilized by 
Families to Support Children at autism-likelihood Survey was operationalized as number of families 
who received or did not receive diagnostic and intervention services before and after 
implementation of the Family Care Project.