Engaging Siblings of Adults With Autism in Future Planning

NCT ID: NCT03374072

Last Updated: 2023-03-07

Basic Information

• Recruitment Status: COMPLETED
• Clinical Phase: NA
• Total Enrollment: 19 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2017-02-01
• Study Completion Date: 2021-08-31

Brief Summary

The goal of this pilot study was to develop and obtain preliminary feasibility and effectiveness data of a telehealth program (Siblings FORWARD) to help siblings of autistic adults work with their families to plan for the future. The main questions it aimed to answer were:

• Is the Siblings FORWARD program feasible to implement via telehealth in the community setting?
• Do siblings benefit from participation in the Siblings FORWARD program?

The Siblings FORWARD program involves 6-7 individualized telehealth sessions with a trained community facilitator. Researchers compared participation in the Siblings FORWARD program to an information-only control condition.

Detailed Description

The researchers developed a program to facilitate the engagement of adult siblings to work with their families to plan for the future of their autistic sibling. Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) targeted common barriers to sibling involvement in family future planning, including improving family communication around difficult topics, increasing siblings' knowledge of and confidence in accessing autism service systems, and anticipating and proactively problem-solving barriers to future planning. The Siblings FORWARD program was developed in collaboration with community organizations, with input from siblings, autistic adults, and community providers. Siblings FORWARD was implemented in a community setting, with trained program facilitators. A small randomized controlled trial tested participation in Siblings FORWARD compared to information about services only.

Conditions

Autistic Disorder

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: TREATMENT
• Blinding Strategy: SINGLE

Study Groups

Siblings FORWARD

Siblings who participate in the Siblings FORWARD program will participate in telehealth sessions with a community provider. The Siblings FORWARD program includes 6-7 sessions, depending upon whether the autistic adult participates. Siblings work with a program facilitator to develop a future plan of action. They learn communication and problem-solving skills, and about adult service systems.

Group Type: EXPERIMENTAL

Siblings FORWARD program

Intervention Type: BEHAVIORAL

Siblings will participate in a program developed by the researchers designed to engage adults with their autistic sibling and other family members to plan for the future. The Siblings FORWARD program will be implemented by community service providers already working with autistic adults. The program will involve a series individual and joint sessions with siblings and autistic adults using Zoom.

Information Only Condition

We will create an online learning module for siblings in the control condition. Siblings in the control condition will be provided with access to the same information about resources for autistic adults provided to participants in the Siblings FORWARD program.

Group Type: ACTIVE_COMPARATOR

Information Only Condition

Intervention Type: BEHAVIORAL

Siblings will be provided with online information about services for adults with ASD and future planning.

Interventions

Siblings FORWARD program

Siblings will participate in a program developed by the researchers designed to engage adults with their autistic sibling and other family members to plan for the future. The Siblings FORWARD program will be implemented by community service providers already working with autistic adults. The program will involve a series individual and joint sessions with siblings and autistic adults using Zoom.

Intervention Type: BEHAVIORAL

Information Only Condition

Siblings will be provided with online information about services for adults with ASD and future planning.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

Siblings of adults with autism spectrum disorder (ASD):

• Have one or more adult brother(s) or sister(s) with ASD who are either biologically related and/or were raised in the same family of origin (e.g., adopted, step, or foster siblings)
• Age 18+.
• English or Spanish fluency.

Autistic Adults:

• Have an ASD diagnosis.
• Have an adult sibling
• Age 21+.
• English or Spanish fluency if verbal.

Exclusion Criteria

Siblings of autistic adults:

-Siblings will be excluded if they have an ASD diagnosis themselves or if they have any disability that would interfere with their ability to engage meaningfully in future planning for the autistic adult.

Autistic adults:

-None

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

National Institute of Mental Health (NIMH)

NIH

Sponsor Role: collaborator

Boston University Charles River Campus

OTHER

Sponsor Role: lead

Responsible Party

Gael Orsmond

Associate Professor

Responsibility Role: PRINCIPAL_INVESTIGATOR

Principal Investigators

Gael Orsmond, PhD

Role: PRINCIPAL_INVESTIGATOR

Boston University

Locations

Boston University

Boston, Massachusetts, United States

Countries

United States

Provided Documents

Document Type: Study Protocol and Statistical Analysis Plan

View Document

Document Type: Informed Consent Form

View Document

Other Identifiers

R34MH111489

Identifier Type: NIH

Identifier Source: secondary_id

View Link

4366E

Identifier Type: -

Identifier Source: org_study_id