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Completed

NCT Number: NCT05965648

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

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

Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program.

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Key information

Conditions

Autism Spectrum Disorder Child Development Disorders, Pervasive Family Relations Mental Disorders Neurodevelopmental Disorders

Age range

14 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Boston University

Boston, Massachusetts, 02215, United States

About this study

The Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program aims to increase family members' active planning for the transition to adulthood in the context of autism. The program is designed to enable flexible delivery for families of youth who are diverse across autism features, co-occurring conditions, service needs, cultural values and preferences, and readiness to engage in planning. The program will be delivered collaboratively with community organizations that support individuals on the autism spectrum and/or their families.

The current project aims to conduct proof-of-concept testing with a culturally-diverse sample of families of transition-aged youth on the autism spectrum. Parents / primary caregivers will participate in 6-7 individual, personalized sessions that incorporate aspects of skill-building (communication, goal-setting, problem-solving, systems navigation), education about services, and motivational interviewing. Youth will be invited to participate in 3 of the sessions along with their parent / primary caregiver. Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program. The investigators will assess indicators of acceptability, feasibility, and improvement on proposed mediators and outcomes.

Who can participate

Healthy volunteers accepted: Yes

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

Inclusion criteria

  • Family Inclusion Criteria
  • 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

Exclusion criteria

none

Treatment and study plan

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).

Primary outcomes

  1. Families FORWARD Program Acceptability Form

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

    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.

  2. Transition Planning Activities Measure

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

    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.

Sponsors and collaborators

Lead sponsor

Boston University Charles River Campus

Other

Collaborators

  • Deborah Munroe Noonan Memorial Research Fund

Registry information

Official study title

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

Important dates

Study start
2023
Primary completion
2024
Study completion
2024
First posted
Jul 28, 2023
Registry last updated
Feb 13, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

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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