Adapting an Advocacy Services Intervention for Latinx Families of Transition-aged Youth With Autism Spectrum Disorder
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Autism
- Sponsor
- Vanderbilt University
- Enrollment
- 48
- Locations
- 1
- Primary Endpoint
- Disability Knowledge Scale
- Status
- Completed
- Last Updated
- last year
Overview
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.
Investigators
Meghan Burke
Professor, Special Education
Vanderbilt University
Eligibility Criteria
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
Outcomes
Primary Outcomes
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.
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.
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.
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.
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.
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.
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.