Adapting an Advocacy Services Intervention for Latinx Families of Transition-aged Youth With Autism Spectrum Disorder
Phase: NA
Conditions: Autism
Sponsor: Vanderbilt University

 
 
 
 
 
 
 
 
 
Testing an advocacy services intervention for Latinx families of transition-aged 
youth with autism 
 
Meghan Burke, PhD 
Department of Special Education, Vanderbilt University 
110 Magnolia Circle 
Nashville, TN 37203 
Meghan.burke@vanderbilt.edu 
 
 
Official Title:  Adapting an Advocacy Services Intervention for Latinx Families of 
Transition-aged Youth With Autism Spectrum Disorder 
 
NCT Number: NCT06207149 
 
Document Date: 8/25/23 (date of most recent approval by the human subjects protection 
review board) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
Table of Contents: 
 
Study Schema 
1.0 
Background 
2.0 
Rationale and Specific Aims 
3.0 
Inclusion/Exclusion Criteria 
4.0 
Enrollment/Randomization 
5.0 
Study Procedures 
6.0 
Reporting of Adverse Events or Unanticipated Problems involving Risk 
to Participants or Others 
7.0 
Study Withdrawal/Discontinuation 
8.0 
Statistical Considerations 
9.0 
Privacy/Confidentiality Issues 
10.0 Follow-up and Record Retention 
 
 

1.0 
Background 
 
Adult disability services are complicated, fragmented, and difficult to navigate. For parents of 
individuals with disabilities, it is frustrating to learn different eligibility schemes, apply for 
services, and actually access appropriate services. It can be especially difficult for Spanish-
speaking, Latinx families to access transition services. Given the systemic barriers facing Spanish-
speaking Latinx families, they may especially benefit from an advocacy program to help them 
learn how to access services. Thus, the purpose of this project is to test the feasibility and 
effectiveness of an advocacy program for Latinx families.  
 
2.0 
Rationale and Specific Aims 
 
The purpose of this study is to determine the feasibility and effectiveness of an advocacy 
program for Latinx families of transition-aged youth with autism. Specifically, we are 
examining whether the participants feel that the program is acceptable and feasible as 
well as whether the program increases their advocacy, knowledge, empowerment, and 
access to services. 
 
3.0 
Inclusion/Exclusion 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.            
 
4.0 
Enrollment/Randomization 
 
Upon learning about the program, the participants will click the link to RedCap. The 
RedCap survey will include the screening questions (see attached). If the participant 
meets the inclusionary criteria, the participant will then be directed to the consent form. If 
the participant signs the consent form, they will then be directed to the pre-survey. After 
completing the pre-survey, the research team will randomize the participant to either 
receive the advocacy program in the fall of 2023 or the spring of 2024. The research team 
will notify the participant of their random assignment. We will enroll 50 participants.  
 
5.0 
Study Procedures 
 
Upon learning about the program, the participants will click the link to RedCap. The 
RedCap survey will include the screening questions. If the participant meets the 
inclusionary criteria, the participant will then be directed to the consent form. If the 
participant signs the consent form, they will then be directed to the pre-survey. After 
completing the pre-survey, the research team will randomize the participant to either 
receive the advocacy program in the fall of 2023 or the spring of 2024. The research team 
will notify the participant of their random assignment. 
 
During the advocacy program, the participant will complete short formative evaluations 
at the end of each session. These evaluations will be completed via RedCap. See 

attached. At the end of the advocacy program, the participant will receive the summative 
evaluation (see attached) and post survey link via RedCap (see attached). Six months 
later, all participants will be asked to complete the follow-up survey (which is identical to 
the post-survey). Altogether, participation is up to nine months. The follow-up survey 
will also be administered via RedCap.  
 
6.0 
Reporting of Adverse Events or Unanticipated Problems involving Risk 
to Participants or Others 
 
This is a minimal risk study. We do not expect any adverse events or unanticipated 
problems. However, if an adverse event or unanticipated problem occurs, it will be 
immediately reported to the PI. The PI will then notify the IRB immediately (i.e., within 
24 hours of learning of the incident).  
 
7.0 
Study Withdrawal/Discontinuation 
 
A participant can withdraw from the study at any time. There is no penalty for 
withdrawing from the stud.  
 
8.0 
Statistical Considerations 
 
This study is sufficiently powered to discern effects on knowledge, advocacy, 
empowerment, and unmet service needs. Inferential statistics will be used to gauge the 
effect of the advocacy program.  
 
9.0 
Privacy/Confidentiality Issues 
 
The advocacy program and data collection will occur in private locations. All data will be 
electronic and stored on password-protected computers of research team members for 
this project. Participant identifiers will be stored separately from the coded participant 
data.   
 
10.0 Follow-up and Record Retention 
 
The study participation should be approximately nine months. Data will be destroyed at 
the conclusion of the study.