Engaging Siblings of Adults With Autism in Future Planning

Boston University Charles River Campus

Status: Completed

Conditions: Autistic Disorder

Treatments: Behavioral: Information Only Condition; Behavioral: Siblings FORWARD program

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT03374072

4366E

R34MH111489 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Full 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.

Enrollment: 19 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

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

Trial design

Primary purpose: Treatment

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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19 participants in 2 patient groups

Siblings FORWARD

Experimental group

Description:

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.

Treatment:

Behavioral: Siblings FORWARD program

Information Only Condition

Active Comparator group

Description:

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.

Treatment:

Behavioral: Information Only Condition