Engaging Siblings of Adults With Autism in Future Planning
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Autistic Disorder
- Sponsor
- Boston University Charles River Campus
- Enrollment
- 19
- Locations
- 1
- Primary Endpoint
- Quality of Sibling Plan of Action
- Status
- Completed
- Last Updated
- 3 years ago
Overview
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.
Investigators
Gael Orsmond
Associate Professor
Boston University Charles River Campus
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)
- •English or Spanish fluency.
- •Autistic Adults:
- •Have an ASD diagnosis.
- •Have an adult sibling
- •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:
Outcomes
Primary Outcomes
Quality of Sibling Plan of Action
Time Frame: 4 months, 7 months
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.
Secondary Outcomes
- Future Planning Self-Efficacy(4 months, 7 months)
- Sibling Knowledge of Family Future Plan(4 months, 7 months)
- Family Communication About Future Planning(4 months, 7 months)
- Sibling Barriers to Future Planning(4 months, 7 months)
- Sibling Knowledge of Adult Services(4 months, 7 months)