NCT03374072

Engaging Siblings of Adults With Autism in Future Planning

• Status: Completed
• Phase: N/A
• Study type: Interventional
• Enrollment: 19 (actual)
• Sponsor: Boston University Charles River Campus · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

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

Interventions

Type	Name	Description
BEHAVIORAL	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.
BEHAVIORAL	Information Only Condition	Siblings will be provided with online information about services for adults with ASD and future planning.

Timeline

• Start date: 2017-02-01
• Primary completion: 2021-08-31
• Completion: 2021-08-31
• First posted: 2017-12-15
• Last updated: 2023-03-07
• Results posted: 2023-03-07

Locations

1 site across 1 country: United States