Adapting an Advocacy Services Intervention for Latinx Families of Transition-aged Youth With Autism Spectrum Disorder

NCT ID: NCT06207149

Last Updated: 2024-10-30

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 48 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2022-08-20
• Study Completion Date: 2024-05-15

Brief Summary

When youth with autism spectrum disorder (ASD) transition from school to adult services, they fall off a "service cliff." To increase access to services, the investigators developed the ASSIST program, which teaches parents how to advocate for adult services on behalf of youth with ASD. In a pilot randomized controlled trial (RCT: R34 MH104428), treatment group (versus control) participants demonstrated significantly improved knowledge of adult services, advocacy, and empowerment. Sons/daughters of treatment group participants had increased access to services. For advocacy services interventions like ASSIST to be equitable, they need to reach families who are at greatest risk for service disparities. Latinx youth with ASD are one such underserved population. Relative to White youth, Latinx youth with ASD receive significantly fewer post-secondary education, health, and employment services and face worse post-school outcomes. In addition to the barriers which hinder service access for all families, Latinx families face unique barriers to service access (e.g., language, cultural differences, citizenship, discrimination) making them a marginalized population. In this project, the investigators are adapting the ASSIST curriculum and related measures for Latinx parents of transition-aged youth with ASD. Specifically, the investigators will leverage ASSIST data and data from Latinx, non-ASSIST parents to inform adaptations to the ASSIST curriculum. The investigators will also conduct pre-testing and a cross-cultural adaptation process to revise the ASSIST measures for Latinx families. The investigators will test the adapted ASSIST curriculum with a randomized controlled trial to determine its feasibility, acceptability and efficacy on intervention targets (knowledge, advocacy, and empowerment) and outcome of interest (service access). This project is aligned with NIMH priorities by examining services from adolescence to adulthood (PA-21-199) and by adapting a program to improve mental health services for underserved populations NIMH 2020 Strategic plan). It is also responsive to the Interagency Autism Coordinating Committee core value of "equity" in reducing disparities with respect to cultural backgrounds. Further, if successful, it will be the first intervention to directly address service disparities for Latinx families of youth with ASD who are transitioning to adulthood.

Conditions

Autism

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: HEALTH_SERVICES_RESEARCH
• Blinding Strategy: NONE

Study Groups

Intervention

Participants will attend an advocacy program.

Group Type: EXPERIMENTAL

ASISTIR

Intervention Type: BEHAVIORAL

This will be a 24 hour advocacy program focused on adult disability services.

Waitlist-Control Group

Participants will receive the written materials of the advocacy program. After completing the intervention group completes the advocacy program, the waitlist-control group participants will be able to participate in the advocacy program.

Group Type: ACTIVE_COMPARATOR

ASISTIR

Intervention Type: BEHAVIORAL

This will be a 24 hour advocacy program focused on adult disability services.

Interventions

ASISTIR

This will be a 24 hour advocacy program focused on adult disability services.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• over the age of 18,
• identify as Latinx,
• have a child with autism who is over the age of 12,
• speak Spanish, and
• reside in Illinois.

Exclusion Criteria

• Must understand Spanish

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Vanderbilt University

OTHER

Sponsor Role: lead

Responsible Party

Meghan Burke

Professor, Special Education

Responsibility Role: PRINCIPAL_INVESTIGATOR

Locations

University of Illinois at Urbana-Champaign

Champaign, Illinois, United States

Countries

United States

References

Burke MM, Ramos-Torres S, Espinosa GH, Hincapie AL, Aleman-Tovar J, Perez R, Puente C. Testing an Advocacy Program to Improve Service Access Among Latino Families of Autistic Youth: A Randomized Controlled Trial. Autism Res. 2025 Aug;18(8):1714-1724. doi: 10.1002/aur.70068. Epub 2025 Jun 21.

Reference Type: DERIVED

PMID: 40542546 (View on PubMed)

Provided Documents

Document Type: Study Protocol

View Document

Document Type: Statistical Analysis Plan

View Document

Other Identifiers

1R03MH129757-01A1

Identifier Type: NIH

Identifier Source: org_study_id

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