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

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.

Study Overview

• Status: Completed
• Conditions: Autism
• Intervention / Treatment: Behavioral: ASISTIR

• Study Type: Interventional
• Enrollment (Actual): 48
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Illinois
    • Champaign, Illinois, United States, 61820
      • University of Illinois at Urbana-Champaign

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: Yes

Description

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

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Health Services Research
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: None (Open Label)

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Intervention; Participants will attend an advocacy program.	Behavioral: ASISTIR; This will be a 24 hour advocacy program focused on adult disability services.
Active Comparator: 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.	Behavioral: ASISTIR; This will be a 24 hour advocacy program focused on adult disability services.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Disability Knowledge Scale	A multiple-choice, multi-item scale assessing knowledge about adult disability services. Higher scores indicate greater knowledge (thus, higher scores are considered better outcomes). The scale ranges from 0 (minimum) to 24 (maximum). Unabbreviated scale title is Knowledge. The construct it measures is knowledge of adult disability services.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training).
Advocacy Activities Scale	A scale with three subscales assessing individual, peer, and systemic advocacy. Only individual advocacy was expected to increase. Higher scores indicate greater advocacy (thus, higher scores means better outcomes). The scale ranges from 12 (minimum) to 60 (maximum). Unabbreviated scale title is Advocacy. The construct the scale measures 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)
Family Empowerment Scale-Family Subscale	The Family Empowerment Scale (the full scale name) measures the constructs of empowerment in relation to the family, community, and service delivery system.Higher scores indicate greater empowerment (thus, higher scores means a better outcome). The scale ranges from 12 (minimum) to 60 (maximum). The items are summed to create a total score. Unabbreviated scale title is Family Empowerment. The construct that the Family Subscale measures is empowerment within the family.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Unmet Service Scale	A scale measuring the extent of service needs among individuals with autism. Scores range from 0 (minimum)-16 (maximum) with higher scores indicating more unmet service needs (thus, lower scores are better outcomes). Unabbreviated scale title is Unmet Services. The construct is unmet service needs.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Family Empowerment Scale-Service Delivery System Subscale	The Family Empowerment Scale (the full scale name) measures the construct of empowerment in relation to the family, community, and service delivery system.Higher scores indicate greater empowerment (thus, higher scores means a better outcome). The scale ranges from 12 (minimum) to 55 (maximum). The items are summed to create a total score. Unabbreviated scale title is Services Empowerment. The construct this subscale measures is empowerment within the service delivery system.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Family Empowerment Scale-Community and Political Subscale	The Family Empowerment Scale (the full scale name) measures the constructs of empowerment in relation to the family, community, and service delivery system.Higher scores indicate greater empowerment (thus, higher scores means a better outcome). The scale ranges from 12 (minimum) to 55 (maximum). The items are summed to create a total score. Unabbreviated scale title is Community and Political Empowerment. The construct that the Community and Political Subscale measures is empowerment within the community and political contexts.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)
Advocacy Skills and Comfort	The full name of this measure is Advocacy Skills and comfort. The Advocacy Skills and comfort scale measures the construct of comfort with advocacy skills. The scale ranges from 10 to 50. Higher scores are better indicating greater comfort with advocacy skills. The items are summed to create a composite.	Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

Collaborators and Investigators

• Sponsor: Vanderbilt University

Study record dates

Study Major Dates

• Study Start (Actual): August 20, 2022
• Primary Completion (Actual): May 15, 2024
• Study Completion (Actual): May 15, 2024

Study Registration Dates

• First Submitted: July 21, 2023
• First Submitted That Met QC Criteria: January 10, 2024
• First Posted (Actual): January 16, 2024

Study Record Updates

• Last Update Posted (Actual): October 30, 2024
• Last Update Submitted That Met QC Criteria: October 8, 2024
• Last Verified: October 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder; Autistic Disorder
• Other Study ID Numbers: 1R03MH129757-01A1 (U.S. NIH Grant/Contract)

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: YES
• IPD Plan Description: We plan to upload de-identified data to NDAR.

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No