Clinical trial NCT03374072: Engaging Siblings of Adults With Autism in Future Planning
Official title: Engaging Siblings of Adults With Autism in Future Planning
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Autistic Disorder
Lead sponsor: Boston University Charles River Campus
Sponsor class: OTHER
Collaborators: name: National Institute of Mental Health (NIMH)
First posted: 2017-12-15
Enrollment: 19
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: TREATMENT

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.

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

Primary outcomes:
measure: Quality of Sibling Plan of Action
timeFrame: 4 months, 7 months
Secondary outcomes:
measure: Family Communication About Future Planning
timeFrame: 4 months, 7 months
measure: Future Planning Self-Efficacy
timeFrame: 4 months, 7 months
measure: Sibling Barriers to Future Planning
timeFrame: 4 months, 7 months
measure: Sibling Knowledge of Adult Services
timeFrame: 4 months, 7 months
measure: Sibling Knowledge of Family Future Plan
timeFrame: 4 months, 7 months
Other outcomes:
Locations:
city: Boston
country: United States
facility: Boston University
state: Massachusetts
Study officials:
affiliation: Boston University
name: Gael Orsmond, PhD
role: PRINCIPAL_INVESTIGATOR
References: