Clinical trial NCT05965648: Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum
Official title: Families FORWARD: Development of a Family-Based Transition Planning Program for Culturally-Diverse Youth on the Autism Spectrum
Study type: INTERVENTIONAL
Overall status: ACTIVE_NOT_RECRUITING
Phase: NA
Conditions: Autism Spectrum Disorder
Family Relations
Lead sponsor: Boston University Charles River Campus
Sponsor class: OTHER
Collaborators: name: Deborah Munroe Noonan Memorial Research Fund
First posted: 2023-07-28
Enrollment: 16
Sex: ALL
Minimum age (years): 14
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Primary purpose: SUPPORTIVE_CARE

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.

Eligibility criteria: 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

Primary outcomes:
measure: Families FORWARD Program Acceptability Form
timeFrame: At the conclusion of all sessions in the program (approximately 3 months)
measure: Transition Planning Activities
timeFrame: Baseline, 3 months
Secondary outcomes:
Other outcomes:
Locations:
city: Boston
country: United States
facility: Boston University
state: Massachusetts
Study officials:
References: