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Completed

NCT Number: NCT06207149

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.

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Key information

Conditions

Autism Autism Spectrum Disorder Autistic Disorder Child Development Disorders, Pervasive Mental Disorders Neurodevelopmental Disorders

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University of Illinois at Urbana-Champaign

Champaign, Illinois, 61820, United States

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

ASISTIR

Behavioral

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

Primary outcomes

  1. Disability Knowledge Scale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training).

    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.

  2. Advocacy Activities Scale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

  3. Family Empowerment Scale-Family Subscale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

  4. Unmet Service Scale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

  5. Family Empowerment Scale-Service Delivery System Subscale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

  6. Family Empowerment Scale-Community and Political Subscale

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

  7. Advocacy Skills and Comfort

    Time frame: Pre, Post (three months after the Intervention group takes the training), and Follow-up (six months after the intervention group takes the training)

    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.

Sponsors and collaborators

Lead sponsor

Vanderbilt University

Other

Registry information

Important dates

Study start
2022
Primary completion
2024
Study completion
2024
First posted
Jan 16, 2024
Registry last updated
Jul 1, 2026

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This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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