Engaging Siblings of Adults With Autism in Future Planning
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology, Psychiatric |
| Therapuetic Areas: | Neurology, Psychiatry / Psychology |
| Healthy: | No |
| Age Range: | 18 - Any |
| Updated: | 1/17/2019 |
| Start Date: | February 1, 2017 |
| End Date: | January 31, 2020 |
| Contact: | Gael Orsmond, PhD |
| Email: | gorsmond@bu.edu |
| Phone: | (617) 353-2703 |
The proposed project is an intervention development grant in which the investigators will
develop a program to facilitate the engagement of adult siblings to work with their families
to plan for the future of their brother or sister with autism spectrum disorder (ASD).
Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) will
target common barriers to sibling involvement in family future planning, including improving
family communication around difficult topics, increasing siblings' knowledge of and
confidence in accessing ASD service systems, and anticipating and proactively problem-solving
barriers to future planning. Siblings FORWARD will be implemented in a community setting.
There are three aims of the project, and only the third aim will utilize a clinical trial.
Aim 1: To develop the Siblings FORWARD program. The investigators will develop the Siblings
FORWARD program in collaboration with community organizations, with input from siblings,
adults with ASD, and community providers. Aim 2: To assess feasibility of the Siblings
FORWARD program. The investigators will assess recruitment capability, appropriateness of
outcome measures, acceptability of the program, and viability of the procedures and further
refine the Siblings FORWARD Program through an open trial with 5 siblings. Aim 3: To assess
the outcomes of participation in the Siblings FORWARD program. The investigators will conduct
a pilot randomized controlled trial (RCT) with 36 siblings. The investigators will collect
pre-, post-, and 3-month follow up data measuring intervention targets (problem-solving
skills, communication skills, self-efficacy, perceived barriers to future planning, knowledge
of services & delivery systems, knowledge of family plans), sibling behavioral outcomes
(development & implementation of a sibling future plan of action, increased family
communication around future planning), and proximal outcomes for the adult with ASD (unmet
needs, quality of life, and family relationships). Siblings will be randomly assigned to the
Siblings FORWARD (N=18) or an information only control condition (N=18). The investigators
hypothesize that siblings who participate in the Siblings FORWARD program will have a more
developed plan of action, gains in skills and knowledge, and improved proximal outcomes for
the adult with ASD, compared to siblings in the control condition.
develop a program to facilitate the engagement of adult siblings to work with their families
to plan for the future of their brother or sister with autism spectrum disorder (ASD).
Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) will
target common barriers to sibling involvement in family future planning, including improving
family communication around difficult topics, increasing siblings' knowledge of and
confidence in accessing ASD service systems, and anticipating and proactively problem-solving
barriers to future planning. Siblings FORWARD will be implemented in a community setting.
There are three aims of the project, and only the third aim will utilize a clinical trial.
Aim 1: To develop the Siblings FORWARD program. The investigators will develop the Siblings
FORWARD program in collaboration with community organizations, with input from siblings,
adults with ASD, and community providers. Aim 2: To assess feasibility of the Siblings
FORWARD program. The investigators will assess recruitment capability, appropriateness of
outcome measures, acceptability of the program, and viability of the procedures and further
refine the Siblings FORWARD Program through an open trial with 5 siblings. Aim 3: To assess
the outcomes of participation in the Siblings FORWARD program. The investigators will conduct
a pilot randomized controlled trial (RCT) with 36 siblings. The investigators will collect
pre-, post-, and 3-month follow up data measuring intervention targets (problem-solving
skills, communication skills, self-efficacy, perceived barriers to future planning, knowledge
of services & delivery systems, knowledge of family plans), sibling behavioral outcomes
(development & implementation of a sibling future plan of action, increased family
communication around future planning), and proximal outcomes for the adult with ASD (unmet
needs, quality of life, and family relationships). Siblings will be randomly assigned to the
Siblings FORWARD (N=18) or an information only control condition (N=18). The investigators
hypothesize that siblings who participate in the Siblings FORWARD program will have a more
developed plan of action, gains in skills and knowledge, and improved proximal outcomes for
the adult with ASD, compared to siblings in the control condition.
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.
Adults with ASD:
- Have an ASD diagnosis.
- Have an adult brother/sister (i.e., a sibling).
- Age 21+.
- English or Spanish fluency if verbal.
Exclusion Criteria:
Siblings of adults with autism spectrum disorder (ASD):
-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 adult with ASD.
Adults with ASD:
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