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Completed

NCT Number: NCT03374072

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.

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Key information

Conditions

Autistic Disorder Autism Spectrum Disorder Child Development Disorders, Pervasive Mental Disorders Neurodevelopmental Disorders

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Boston University

Boston, Massachusetts, 02215, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Siblings FORWARD program

Behavioral

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.

Information Only Condition

Behavioral

Siblings will be provided with online information about services for adults with ASD and future planning.

Primary outcomes

  1. 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

  1. Family Communication About Future Planning

    Time frame: 4 months, 7 months

    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.

  2. Future Planning Self-Efficacy

    Time frame: 4 months, 7 months

    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.

  3. Sibling Barriers to Future Planning

    Time frame: 4 months, 7 months

    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. Sibling Knowledge of Adult Services

    Time frame: 4 months, 7 months

    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.

  5. Sibling Knowledge of Family Future Plan

    Time frame: 4 months, 7 months

    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

Sponsors and collaborators

Lead sponsor

Boston University Charles River Campus

Other

Collaborators

  • National Institute of Mental Health (NIMH)

Registry information

Important dates

Study start
2017
Primary completion
2021
Study completion
2021
First posted
Dec 15, 2017
Registry last updated
Mar 7, 2023

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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