Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum

NCT05965648 | Completed Results

• 1 other identifier: 6444E
• Study Type: interventional
• Target: 27
• Locations: 1 country
• Sites: 1

Brief Summary

The goal of this clinical study is to develop a community-based program to support family members of transition-aged youth on the autism spectrum to help them plan for the future. The main aims of the study are:

1. 1.To develop the Families FORWARD program
2. 2.To conduct proof-of-concept testing of the Families FORWARD program

Conditions

Autism Spectrum Disorder; Family Relations

Outcome Measures

Primary Outcomes (2)

• Families FORWARD Program Acceptability Form

  Parents/caregivers (and youth, when applicable) completed the Program Acceptability scale which assess acceptability, appropriateness, and feasibility of the FamiliesFORWARD program. Item scores range from 1 to 5. The measure was scored by a total summation; total scores range from 12 to 60. Higher scores are associated with higher perceptions of intervention acceptability, appropriateness, and feasibility.

  Within 2 weeks post-intervention (i.e., 3-4 months after enrollment).

• Transition Planning Activities Measure

  The Transition Preparation Activities Measure (T-PAM) was the outcome measure used to assess parents' readiness for their youth's transition to adulthood after completing the Families FORWARD intervention. Item scores range from 1 to 5. Total scores on the measure range from 14 to 70, with higher scores associated with higher transition readiness. Parents/caregivers completed an online version of the T-PAM following completion of the Families FORWARD intervention.

  Within 2 weeks post-intervention (i.e., 3-4 months after enrollment).

Study Arms (1)

Families FORWARD

OTHER

This is a single-arm trial of a new transition planning program for families of youth on the autism spectrum. The program includes six or seven bi-weekly parent sessions, three of which are optional for the youth to attend. The program will be facilitated by community-based service providers who work with transition-aged youth on the autism spectrum and/or their families. Baseline characteristics were not collected for service providers.

Behavioral: Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD)

Interventions

Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) BEHAVIORAL

Families FORWARD aims to engage families in planning for adulthood earlier and more actively. Program skills include communication and problem-solving; guided practice in setting realistic goals, breaking down goals into incremental action steps, and problem-solving barriers to goal attainment; repeated engagement in future-oriented communication; and training on how to navigate transition-related and adult services. Parents/caregivers will participate in six or seven telehealth sessions (60-75 minutes each). Youth on the autism spectrum will have the option of participating in up to three program sessions to increase collaborative planning within the family. Families will identify and work toward individualized transition planning goals that may fall within any area of planning or functioning (e.g., housing, education, guardianship).

Families FORWARD

Eligibility Criteria

• Age: 14 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

• Parents or primary caregivers of transition-aged youth on the autism spectrum:
• Have one or more child(ren) on the autism spectrum who is/are ages 14-21 years old
• Identify as the parent, legal guardian, and/or primary caregiver of the youth
• Speak English fluently
• Reside in Massachusetts
• Youth on the autism spectrum:
• Have an autism diagnosis OR identify as autistic
• Age 14-21
• Have ability to communicate verbally or in written format in English
• Reside in Massachusetts

Sponsors & Collaborators

• Boston University Charles River Campus: lead
• Deborah Munroe Noonan Memorial Research Fund: collaborator

Study Sites (1)

Boston University

Boston, Massachusetts, 02215, United States

Location

MeSH Terms

Conditions

Autism Spectrum Disorder

Interventions

Health

Condition Hierarchy (Ancestors)

Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Intervention Hierarchy (Ancestors)

Population Characteristics

Limitations and Caveats

Outcomes reflect data from a proof of concept trial regarding the FamiliesFORWARD program, which was not designed to measure statistically significant results.

Results Point of Contact

• Title: Dr. Kristin Long
• Organization: Boston University

KALong@bu.edu

(617)-358-1633

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: June 28, 2023
• First Posted: July 28, 2023
• Study Start: September 2, 2023
• Primary Completion: September 1, 2024
• Study Completion: September 1, 2024
• Last Updated: February 13, 2026
• Results First Posted: February 13, 2026

Record last verified: 2026-01

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)