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

NCT ID: NCT05965648

Last Updated: 2024-08-09

Basic Information

• Recruitment Status: ACTIVE_NOT_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 16 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2023-09-01
• Study Completion Date: 2024-12-31

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. 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.

Detailed Description

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.

Conditions

Autism Spectrum Disorder; Family Relations

Study Design

• Allocation Method: NA
• Intervention Model: SINGLE_GROUP
• Primary Study Purpose: SUPPORTIVE_CARE
• Blinding Strategy: NONE

Study Groups

Families FORWARD

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.

Group Type: OTHER

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

Intervention Type: 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).

Interventions

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

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).

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

1. Parents or primary caregivers of transition-aged youth on the autism spectrum:

1. Have one or more child(ren) on the autism spectrum who is/are ages 14-21 years old

2. Identify as the parent, legal guardian, and/or primary caregiver of the youth

3. Speak English fluently

4. Reside in Massachusetts

2. Youth on the autism spectrum:

1. Have an autism diagnosis OR identify as autistic

2. Age 14-21

3. Have ability to communicate verbally or in written format in English

4. Reside in Massachusetts

• Minimum Eligible Age: 14 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Deborah Munroe Noonan Memorial Research Fund

OTHER

Sponsor Role: collaborator

Boston University Charles River Campus

OTHER

Sponsor Role: lead

Responsible Party

Kristin Long

Associate Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Locations

Boston University

Boston, Massachusetts, United States

Countries

United States

Other Identifiers

6444E

Identifier Type: -

Identifier Source: org_study_id