Engaging Siblings of Adults With Autism in Future Planning

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.

Study Overview

• Status: Completed
• Conditions: Autistic Disorder
• Intervention / Treatment: Behavioral: Siblings FORWARD program; Behavioral: Information Only 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.

• Study Type: Interventional
• Enrollment (Actual): 19
• Phase: Not Applicable

Contacts and Locations

Study Locations

• United States
  • Massachusetts
    • Boston, Massachusetts, United States, 02215
      • Boston University

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: No
• Genders Eligible for Study: All

Description

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

Study Plan

How is the study designed?

Design Details

• Primary Purpose: Treatment
• Allocation: Randomized
• Interventional Model: Parallel Assignment
• Masking: Single

Number of Arms

2

Arms and Interventions

Participant Group / Arm	Intervention / Treatment
Experimental: Siblings FORWARD; 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.	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.
Active Comparator: Information Only Condition; 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.	Behavioral: Information Only Condition; Siblings will be provided with online information about services for adults with ASD and future planning.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Quality of Sibling Plan of Action	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.	4 months, 7 months

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Family Communication About Future Planning	Adapted from a measure used by Heller and Caldwell (2006). Siblings rated the frequency with which they have had family discussions about planning for the future of regarding their autistic sibling. Adult sibling participants responded to a 1-item measure scored on a 3-point scale (not discussed at all, discussed somewhat, discussed a great deal). Higher scores reflect more frequent communication.	4 months, 7 months
Future Planning Self-Efficacy	Adapted version of the Caregiver Self-Efficacy Scale used by Heller and Caldwell (2006). Sibling participants completed 5 items rated on a 4-point scale (strongly disagree to strong agree). Scores range from 5 to 20, with higher scores indicating higher self-efficacy.	4 months, 7 months
Sibling Barriers to Future Planning	Adapted from a measure used by Heller and Caldwell (2006). Sibling participants complete a list of barriers to future planning that includes barriers such as: difficulty finding helpful contact persons within the service system, emotional barriers involved with thinking their parents' mortality, or disagreement with a relative with a disability about the future. Scores ranged from 0 to 12 with higher scores indicating more barriers reported.	4 months, 7 months
Sibling Knowledge of Adult Services	Adapted from a measure used by Taylor and Seltzer (2011). Sibling participants rated their knowledge of the services received or needed by their autistic sibling. The investigators used a list of 15 adult services: physical therapy, occupational therapy, speech and language therapy, psychological or psychiatric services, crisis/intervention services, personal care assistance, agency sponsored recreational or social activities, transportation services, income support, vocational services, respite services, and Medicaid. Siblings rated whether or not their autistic sibling currently receives the services, or if they do not know. If they know that their autistic sibling is not receiving a service, they indicated whether or not that service is needed. Scores ranged from 0 to 15 with higher scores indicating more knowledge.	4 months, 7 months
Sibling Knowledge of Family Future Plan	Investigator developed. Siblings completed a checklist of their knowledge (yes/no/ don't know) of whether their family has established: (1) a will, (2) a special needs trust, (3), a financial plan; (4) a letter of intent; (5) a long-term residential plan; or (6) determination of future guardianship. Scores range from 0 to 6 with a high score indicating more areas addressed	4 months, 7 months

Other Outcome Measures

Outcome Measure	Measure Description	Time Frame
Life Experiences Checklist	Developed by Ager (1993). Siblings will rate their brother/sister's quality of life using the Life Experiences Checklist. Five sections cover the individual's home environment, leisure activities, relationships, freedom, and opportunities.	baseline, 4 months, 7 months
World Health Organization Quality of Life - Brief Version	Developed by Skevington, Lotfy and O'Connell (2004). Adults with ASD will complete the WHOQOL-BREF, a shorter version of World Health Organization Quality of Life assessment, the WHOQOL-100. The WHOQOL-BREF includes 26 items rated on a 5-point scale (1=not at all/very poor/very dissatisfied to 5 = completely/very good/very satisfied) addressing physical and psychological health, social relationships, and environment. Items will be summed to create a total raw score ranging from 26 to 130 with higher scores representing better quality of life.	baseline, 4 months, 7 months
Adult with ASD Unmet Needs.	Developed by Nicolaidis et al. (2013). Adults with ASD will report on their perceptions of unmet needs in medical care, mental healthcare or counseling, preventive services, emergency department visits, outpatient visits, and hospitalizations	baseline, 3 months, 7 months
Social and Emotional Loneliness Scale - Family subscale	Developed by DiTommaso and Spinner (1993). Adults with ASD will complete the 11-item Family subscale, which assesses feelings of loneliness within the family (e.g., lack of family support). Each item is rated on a 7-point scale from 1 'strongly disagree' to 7 'strongly agree.' Items will be summed to create a total raw score ranging from 11 to 77 with higher scores representing more loneliness in the family.	baseline, 3 months, 7 months

Collaborators and Investigators

• Sponsor: Boston University Charles River Campus
• Collaborators: National Institute of Mental Health (NIMH)
• Investigators: Principal Investigator: Gael Orsmond, PhD, Boston University

Study record dates

Study Major Dates

• Study Start (Actual): February 1, 2017
• Primary Completion (Actual): August 31, 2021
• Study Completion (Actual): August 31, 2021

Study Registration Dates

• First Submitted: December 5, 2017
• First Submitted That Met QC Criteria: December 11, 2017
• First Posted (Actual): December 15, 2017

Study Record Updates

• Last Update Posted (Estimate): March 7, 2023
• Last Update Submitted That Met QC Criteria: February 7, 2023
• Last Verified: February 1, 2023

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Neurodevelopmental Disorders; Child Development Disorders, Pervasive; Autism Spectrum Disorder; Autistic Disorder
• Other Study ID Numbers: 4366E; R34MH111489 (U.S. NIH Grant/Contract)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No