Engaging Siblings of Adults With Autism in Future Planning

NCT03374072 | Completed Results

• 2 other identifiers: 4366ER34MH111489
• Study Type: interventional
• Target: 19
• Locations: 1 country
• Sites: 1

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.

Conditions

Autistic Disorder

Outcome Measures

Primary Outcomes (1)

• Quality of Sibling Plan of Action

  Investigator developed. Siblings from both conditions submitted a written plan of action at pre- and post-intervention. The investigators used a template on which siblings detailed their short- and long-term goals with respect to planning for the future with their autistic sibling, and their concrete next steps. Blind ratings of the quality of each plan were conducted, according specific criteria that captured the appropriateness and specificity of the plan. Scores range from 0 to 9, with higher scores representing better quality of plan.

  4 months, 7 months

Secondary Outcomes (5)

• Family Communication About Future Planning

  4 months, 7 months

• Future Planning Self-Efficacy

  4 months, 7 months

• Sibling Barriers to Future Planning

  4 months, 7 months

• Sibling Knowledge of Adult Services

  4 months, 7 months

• Sibling Knowledge of Family Future Plan

  4 months, 7 months

Study Arms (2)

Siblings FORWARD

EXPERIMENTAL

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.

Behavioral: Siblings FORWARD program

Information Only Condition

ACTIVE COMPARATOR

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.

Behavioral: Information Only Condition

Interventions

Siblings FORWARD program 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.

Siblings FORWARD

Information Only Condition BEHAVIORAL

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

Information Only Condition

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• 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.

You may not qualify if:

• 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

Sponsors & Collaborators

• Boston University Charles River Campus: lead
• National Institute of Mental Health (NIMH): collaborator

Study Sites (1)

Boston University

Boston, Massachusetts, 02215, United States

Location

MeSH Terms

Conditions

Autistic Disorder

Condition Hierarchy (Ancestors)

Autism Spectrum Disorder; Child Development Disorders, Pervasive; Neurodevelopmental Disorders; Mental Disorders

Results Point of Contact

• Title: Dr. Gael Orsmond
• Organization: Boston University

gorsmond@bu.edu

(617)353-2703

Study Officials

• Gael Orsmond, PhD

  Boston University

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: No
• Restrictive Agreement: No

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: OUTCOMES ASSESSOR
• Purpose: TREATMENT
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: December 5, 2017
• First Posted: December 15, 2017
• Study Start: February 1, 2017
• Primary Completion: August 31, 2021
• Study Completion: August 31, 2021
• Last Updated: March 7, 2023
• Results First Posted: March 7, 2023

Record last verified: 2023-02

Locations

US (1)