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

Boston University Charles River Campus27 enrolled

Overview

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.

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.

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

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).

Eligibility

Sex: ALLMin age: 14 YearsHealthy volunteers:

Medical Language ↔ Plain English

Inclusion Criteria: * Family 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 Exclusion Criteria: none

Outcomes

Primary Outcomes

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.

Time frame: 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.