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

Autism Clinical Trial

Official title:

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

Clinical Trial Details — Status: Active, not recruiting

Administrative data

• NCT number: NCT06207149
• Other study ID #: 1R03MH129757-01A1
• Status: Active, not recruiting
• Phase: N/A
• Start date: August 20, 2022
• Est. completion date: December 2024

Study information

• Verified date: March 2024
• Source: Vanderbilt University
• Contact: n/a
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

Recruitment information / eligibility

• Status: Active, not recruiting
• Enrollment: 64
• Est. completion date: December 2024
• Est. primary completion date: December 2024
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

Inclusion Criteria: To be included in the study, the participant must be:

• 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

Related Conditions & MeSH terms

• Autism
• Autism Spectrum Disorder
• Autistic Disorder

Intervention

Behavioral:
• ASISTIR
This will be a 24 hour advocacy program focused on adult disability services.

Locations

Country	Name	City	State
United States	University of Illinois at Urbana-Champaign	Champaign	Illinois

Sponsors (1)

Lead Sponsor	Collaborator
Vanderbilt University

Country where clinical trial is conducted

United States, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Disability Knowledge Scale	A multiple-choice, multi-item scale assessing knowledge about adult disability services. Higher scores indicate greater knowledge. The scale ranges from 0 to 24. Unabbreviated scale title is Knowledge.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training).
Primary	Advocacy Activities Scale	A scale with three subscales assessing individual, peer, and systemic advocacy. Higher scores indicate greater advocacy. The scale ranges from 12 to 60. Unabbreviated scale title is Advocacy.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Primary	Family Empowerment Scale	A scale measuring empowerment in relation to the family, community, and service delivery system.Higher scores indicate greater empowerment. The scale ranges from 32 to 160. Unabbreviated scale title is Empowerment.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Primary	Unmet Service Scale	A scale measuring the extent of service needs among individuals with autism. Scores range from 0-16 with higher scores indicating more services. Unabbreviated scale title is Unmet Services.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)