Clinical trial NCT06314438: Culturally-Responsive Curriculum for Caregivers With Children at Autism Likelihood
Official 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
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Autism
Development Delay
Lead sponsor: University of Washington
Sponsor class: OTHER
Collaborators: name: National Center for Advancing Translational Sciences (NCATS)
First posted: 2024-03-18
Enrollment: 41
Sex: ALL
Minimum age (years): 18
Maximum age (years): 85
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

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.

Eligibility criteria: 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

Exclusion Criteria:

-

Primary outcomes:
measure: Staff Training Feedback Survey of Implementation Properties (Self-report)
timeFrame: 1 week after staff complete training in Family Care Project, which is 1 week before the pilot commences
measure: Staff Competence in Assisting Families With Children At-autism Likelihood Survey (Self-report)
timeFrame: 1 week after implementation of Family Care Project with pilot families
measure: The Maternal Self-Efficacy Scale Questionnaire
timeFrame: 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
measure: Caregiver Knowledge and Use of Behaviors That Support Children at Autism-likelihood Survey
timeFrame: 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
measure: Current Services Utilized by Families to Support Children at Autism-likelihood Survey
timeFrame: 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
measure: Family Care Project Feedback Survey of Implementation Properties
timeFrame: 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
Secondary outcomes:
Other outcomes:
Locations:
city: Kent
country: United States
facility: Mother Africa
state: Washington
Study officials:
affiliation: University of Washington
name: Wendy L Stone, PhD
role: PRINCIPAL_INVESTIGATOR
References: