Culturally-Responsive Curriculum for Caregivers With Children at Autism Likelihood

Not Applicable

Completed

• Conditions: Autism; Development Delay
• Interventions: Behavioral: Family Care Project

• Registration Number: NCT06314438
• Lead Sponsor: University of Washington

Brief Summary

The goal of this clinical trial is to examine how helpful and relevant the Family Care Project workbook is for families from culturally and linguistically diverse backgrounds who have a young child at autism likelihood. The main questions this trial aims to answer are:

* Is the Family Care Project workbook useful for families?

* Is the Family Care Project workbook easy to use?

* Can the Family Care Project be implemented by non-profit workers who do not have health backgrounds?

Participants will complete surveys that elicit their feedback on their use of the workbook.

Detailed Description

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 (CALD) communities experience lengthier time-periods between first concerns and receipt of services, report increased difficulty accessing timely diagnostic and treatment services, and ultimately experience worse health outcomes compared to White communities. The investigators will partner with Mother Africa, a local non-profit organization, to 1) co-design culturally-responsive caregiver-focused educational materials to support CALD 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 will 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 planned research has the potential to effect 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.

Study Timeline

• Study Start: 2023-12-15
• Study First Submitted: 2023-12-21
• Study First Submitted QC: 2024-03-13
• Primary Completion: 2024-03-15
• Study Completion: 2024-03-15
• Study First Posted: 2024-03-18
• Status Verified: 2024-05
• Last Update Submitted: 2024-05-06
• Last Update Posted: 2024-05-08

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 41

Inclusion Criteria

• Has a child who screens at likelihood on the Ages and Stages Questionnaire
• Speaks one of the following languages: Arabic, Mai Mai, Swahili, French, Tigrinya, Dari

Read More

Exclusion Criteria

Read More

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Arm && Interventions

Group	Intervention	Description
Family Care Project workbook	Family Care Project	Caregivers will be administered the Family Care Project workbook.

Primary Outcome Measures

Name	Time	Method
Current Services Utilized by Families to Support Children at autism-likelihood Survey	The first session of the Family Care Project and the last session of the Family Care Project, which is separated by 4-6 weeks depending on family preference	Through a study-specific survey, caregivers will answer questions about their child's developmental diagnostic evaluations or current developmental services in the community. They will complete the survey online.
Staff Training Feedback Survey of Implementation Properties (self-report)	1 week after staff complete training in Family Care Project, which is 1 week before the pilot commences	Through a study-specific survey, staff will answer questions about the acceptability, feasibility, and appropriateness of the training. Staff will also have the opportunity to offer suggestions for improvements to the training curriculum. This questionnaire is administered online.
Caregiver Knowledge and Use of Behaviors that Support Children at autism-likelihood Survey	The first session of the Family Care Project and the last session of the Family Care Project, which is separated by 4-6 weeks depending on family preference	Through a study-specific survey, caregivers will answer questions about their knowledge of child development, navigating appropriate child services, setting up a visual support, and creating a self-care plan. They will also answer questions about whether they have used a visual support or implemented a self-care routine. This survey is study-specific and created based on the curriculum topics. It will be filled out via online survey.
Family Care Project Feedback Survey of Implementation Properties	During the last session of the Family Care Project, which is approximately 4-6 weeks after the start of the pilot depending on family preferences	Through a study-specific survey, mother africa staff and caregivers will answer questions about the acceptability, feasibility, and appropriateness of the Family Care Project and suggestions for revisions. They will fill out questions on an online survey.
Staff Competence in Assisting Families with Children at-autism Likelihood Survey (self-report)	1 week before and 1 week after implementation of Family Care Project with pilot families	Through a study-specific survey, staff will self-report their competence in identifying caregiver concerns, helping caregivers access services, providing new parenting strategies to caregivers, and helping caregivers set up a self-care plan. They will complete these questions via a survey.
The Maternal Self-Efficacy Scale Questionnaire	The first session of the Family Care Project and the last session of the Family Care Project, which is separated by 4-6 weeks depending on family preference	This questionnaire is a validated measure of caregivers' beliefs about their performance (i.e., self-efficacy) in caregiving tasks. Caregivers will fill out the survey online.

Trial Locations

Locations (1)

Mother Africa; 🇺🇸 Kent, Washington, United States