Engaging Siblings of Adults With Autism in Future Planning

Status

Completed

Phases

Study type

Interventional

Source

ClinicalTrials.gov

Registry ID

NCT03374072

Enrollment

Registered

2017-12-15

Start date

2017-02-01

Completion date

2021-08-31

Last updated

2023-03-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Autistic Disorder

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.

Interventions

BEHAVIORALSiblings 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.

BEHAVIORALInformation Only Condition

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

Study design

Allocation

RANDOMIZED

Intervention model

PARALLEL

Primary purpose

TREATMENT

Masking

SINGLE (Outcomes Assessor)

Eligibility

Sex/Gender

ALL

Age

18 Years to No maximum

Healthy volunteers

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

Design outcomes

Primary

Measure	Time frame	Description
Quality of Sibling Plan of Action	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

Measure	Time frame	Description
Family Communication About Future Planning	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.
Future Planning Self-Efficacy	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.
Sibling Barriers to Future Planning	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.
Sibling Knowledge of Adult Services	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.
Sibling Knowledge of Family Future Plan	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

Countries

United States

Participant flow

Participants by arm

Arm	Count
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. 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.	10
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. Information Only Condition: Siblings will be provided with online information about services for adults with ASD and future planning.	9
Total	19

Baseline characteristics

Characteristic	Siblings FORWARD	Total	Information Only Condition
Age, Continuous	25.32 years STANDARD_DEVIATION 4.96	25.82 years STANDARD_DEVIATION 4.15	26.37 years STANDARD_DEVIATION 3.22
Ethnicity (NIH/OMB) Hispanic or Latino	1 Participants	1 Participants	0 Participants
Ethnicity (NIH/OMB) Not Hispanic or Latino	9 Participants	18 Participants	9 Participants
Ethnicity (NIH/OMB) Unknown or Not Reported	0 Participants	0 Participants	0 Participants
Family Communication	2.10 units on a scale STANDARD_DEVIATION 0.32	2.00 units on a scale STANDARD_DEVIATION 0.58	1.89 units on a scale STANDARD_DEVIATION 0.78
Future Planning Self-Efficacy	14.90 units on a scale STANDARD_DEVIATION 3.03	15.47 units on a scale STANDARD_DEVIATION 2.86	16.11 units on a scale STANDARD_DEVIATION 2.67
Quality of Sibling Plan of Action	7.33 units on a scale STANDARD_DEVIATION 1.5	7.53 units on a scale STANDARD_DEVIATION 1.46	7.75 units on a scale STANDARD_DEVIATION 1.48
Race (NIH/OMB) American Indian or Alaska Native	0 Participants	0 Participants	0 Participants
Race (NIH/OMB) Asian	1 Participants	2 Participants	1 Participants
Race (NIH/OMB) Black or African American	0 Participants	0 Participants	0 Participants
Race (NIH/OMB) More than one race	0 Participants	0 Participants	0 Participants
Race (NIH/OMB) Native Hawaiian or Other Pacific Islander	0 Participants	0 Participants	0 Participants
Race (NIH/OMB) Unknown or Not Reported	0 Participants	0 Participants	0 Participants
Race (NIH/OMB) White	9 Participants	17 Participants	8 Participants
Sex: Female, Male Female	8 Participants	17 Participants	9 Participants
Sex: Female, Male Male	2 Participants	2 Participants	0 Participants
Sibling Barriers to Future Planning	2.60 units on a scale STANDARD_DEVIATION 2.91	3.42 units on a scale STANDARD_DEVIATION 3.02	4.33 units on a scale STANDARD_DEVIATION 3.04
Sibling Knowledge of Adult Services	12.20 units on a scale STANDARD_DEVIATION 2.78	11.21 units on a scale STANDARD_DEVIATION 3.47	10.11 units on a scale STANDARD_DEVIATION 3.98
Sibling Knowledge of Family Future Plan	1.70 units on a scale STANDARD_DEVIATION 1.89	1.95 units on a scale STANDARD_DEVIATION 1.93	2.22 units on a scale STANDARD_DEVIATION 2.05

Adverse events

Event type	EG000 affected / at risk	EG001 affected / at risk
deaths Total, all-cause mortality	0 / 10	0 / 9
other Total, other adverse events	0 / 10	0 / 9
serious Total, serious adverse events	0 / 10	0 / 9

Outcome results

Primary

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.