Trial Outcomes & Findings for Engaging Siblings of Adults With Autism in Future Planning (NCT NCT03374072)
NCT ID: NCT03374072
Last Updated: 2023-03-07
Results Overview
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.
Recruitment status
COMPLETED
Study phase
NA
Target enrollment
19 participants
Primary outcome timeframe
4 months, 7 months
Results posted on
2023-03-07
Participant Flow
Participant milestones
| Measure |
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.
|
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 autistic adults and future planning.
|
|---|---|---|
|
4 Months
STARTED
|
10
|
9
|
|
4 Months
COMPLETED
|
8
|
9
|
|
4 Months
NOT COMPLETED
|
2
|
0
|
|
7 Months
STARTED
|
8
|
9
|
|
7 Months
COMPLETED
|
8
|
9
|
|
7 Months
NOT COMPLETED
|
0
|
0
|
Reasons for withdrawal
Withdrawal data not reported
Baseline Characteristics
One participant from each group did not complete the measure at baseline
Baseline characteristics by cohort
| Measure |
Siblings FORWARD
n=10 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
Total
n=19 Participants
Total of all reporting groups
|
|---|---|---|---|
|
Age, Continuous
|
25.32 years
STANDARD_DEVIATION 4.96 • n=10 Participants
|
26.37 years
STANDARD_DEVIATION 3.22 • n=9 Participants
|
25.82 years
STANDARD_DEVIATION 4.15 • n=19 Participants
|
|
Sex: Female, Male
Female
|
8 Participants
n=10 Participants
|
9 Participants
n=9 Participants
|
17 Participants
n=19 Participants
|
|
Sex: Female, Male
Male
|
2 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
2 Participants
n=19 Participants
|
|
Ethnicity (NIH/OMB)
Hispanic or Latino
|
1 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
1 Participants
n=19 Participants
|
|
Ethnicity (NIH/OMB)
Not Hispanic or Latino
|
9 Participants
n=10 Participants
|
9 Participants
n=9 Participants
|
18 Participants
n=19 Participants
|
|
Ethnicity (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Race (NIH/OMB)
American Indian or Alaska Native
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Race (NIH/OMB)
Asian
|
1 Participants
n=10 Participants
|
1 Participants
n=9 Participants
|
2 Participants
n=19 Participants
|
|
Race (NIH/OMB)
Native Hawaiian or Other Pacific Islander
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Race (NIH/OMB)
Black or African American
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Race (NIH/OMB)
White
|
9 Participants
n=10 Participants
|
8 Participants
n=9 Participants
|
17 Participants
n=19 Participants
|
|
Race (NIH/OMB)
More than one race
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Race (NIH/OMB)
Unknown or Not Reported
|
0 Participants
n=10 Participants
|
0 Participants
n=9 Participants
|
0 Participants
n=19 Participants
|
|
Quality of Sibling Plan of Action
|
7.33 units on a scale
STANDARD_DEVIATION 1.50 • n=9 Participants • One participant from each group did not complete the measure at baseline
|
7.75 units on a scale
STANDARD_DEVIATION 1.48 • n=8 Participants • One participant from each group did not complete the measure at baseline
|
7.53 units on a scale
STANDARD_DEVIATION 1.46 • n=17 Participants • One participant from each group did not complete the measure at baseline
|
|
Family Communication
|
2.10 units on a scale
STANDARD_DEVIATION 0.32 • n=10 Participants
|
1.89 units on a scale
STANDARD_DEVIATION 0.78 • n=9 Participants
|
2.00 units on a scale
STANDARD_DEVIATION 0.58 • n=19 Participants
|
|
Future Planning Self-Efficacy
|
14.90 units on a scale
STANDARD_DEVIATION 3.03 • n=10 Participants
|
16.11 units on a scale
STANDARD_DEVIATION 2.67 • n=9 Participants
|
15.47 units on a scale
STANDARD_DEVIATION 2.86 • n=19 Participants
|
|
Sibling Barriers to Future Planning
|
2.60 units on a scale
STANDARD_DEVIATION 2.91 • n=10 Participants
|
4.33 units on a scale
STANDARD_DEVIATION 3.04 • n=9 Participants
|
3.42 units on a scale
STANDARD_DEVIATION 3.02 • n=19 Participants
|
|
Sibling Knowledge of Adult Services
|
12.20 units on a scale
STANDARD_DEVIATION 2.78 • n=10 Participants
|
10.11 units on a scale
STANDARD_DEVIATION 3.98 • n=9 Participants
|
11.21 units on a scale
STANDARD_DEVIATION 3.47 • n=19 Participants
|
|
Sibling Knowledge of Family Future Plan
|
1.70 units on a scale
STANDARD_DEVIATION 1.89 • n=10 Participants
|
2.22 units on a scale
STANDARD_DEVIATION 2.05 • n=9 Participants
|
1.95 units on a scale
STANDARD_DEVIATION 1.93 • n=19 Participants
|
PRIMARY outcome
Timeframe: 4 months, 7 monthsPopulation: Missing data from one participant in the Siblings FORWARD condition.
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.
Outcome measures
| Measure |
Siblings FORWARD
n=7 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Quality of Sibling Plan of Action
4 months
|
6.00 units on a scale
Standard Deviation 2.38
|
5.44 units on a scale
Standard Deviation 2.79
|
|
Quality of Sibling Plan of Action
7 months
|
6.43 units on a scale
Standard Deviation 1.51
|
6.56 units on a scale
Standard Deviation 1.42
|
SECONDARY outcome
Timeframe: 4 months, 7 monthsAdapted 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.
Outcome measures
| Measure |
Siblings FORWARD
n=8 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Family Communication About Future Planning
4 months
|
2.13 units on a scale
Standard Deviation 0.35
|
2.00 units on a scale
Standard Deviation 0.71
|
|
Family Communication About Future Planning
7 months
|
2.00 units on a scale
Standard Deviation 0.54
|
1.89 units on a scale
Standard Deviation 0.78
|
SECONDARY outcome
Timeframe: 4 months, 7 monthsAdapted 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.
Outcome measures
| Measure |
Siblings FORWARD
n=8 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Future Planning Self-Efficacy
7 months
|
14.00 units on a scale
Standard Deviation 1.51
|
15.78 units on a scale
Standard Deviation 2.22
|
|
Future Planning Self-Efficacy
4 months
|
12.38 units on a scale
Standard Deviation 3.29
|
15.22 units on a scale
Standard Deviation 1.56
|
SECONDARY outcome
Timeframe: 4 months, 7 monthsAdapted 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.
Outcome measures
| Measure |
Siblings FORWARD
n=8 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Sibling Barriers to Future Planning
4 months
|
3.38 units on a scale
Standard Deviation 2.20
|
4.89 units on a scale
Standard Deviation 2.62
|
|
Sibling Barriers to Future Planning
7 months
|
2.88 units on a scale
Standard Deviation 1.81
|
4.67 units on a scale
Standard Deviation 3.08
|
SECONDARY outcome
Timeframe: 4 months, 7 monthsAdapted 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.
Outcome measures
| Measure |
Siblings FORWARD
n=8 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Sibling Knowledge of Adult Services
7 months
|
14.50 units on a scale
Standard Deviation 0.76
|
10.67 units on a scale
Standard Deviation 2.83
|
|
Sibling Knowledge of Adult Services
4 months
|
14.13 units on a scale
Standard Deviation 0.99
|
10.33 units on a scale
Standard Deviation 3.24
|
SECONDARY outcome
Timeframe: 4 months, 7 monthsInvestigator 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
Outcome measures
| Measure |
Siblings FORWARD
n=8 Participants
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.
|
Information Only Condition
n=9 Participants
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.
|
|---|---|---|
|
Sibling Knowledge of Family Future Plan
4 months
|
1.63 units on a scale
Standard Deviation 2.20
|
2.78 units on a scale
Standard Deviation 2.39
|
|
Sibling Knowledge of Family Future Plan
7 months
|
1.75 units on a scale
Standard Deviation 1.98
|
2.44 units on a scale
Standard Deviation 1.33
|
Adverse Events
Siblings FORWARD
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Information Only Condition
Serious events: 0 serious events
Other events: 0 other events
Deaths: 0 deaths
Serious adverse events
Adverse event data not reported
Other adverse events
Adverse event data not reported
Additional Information
Results disclosure agreements
- Principal investigator is a sponsor employee
- Publication restrictions are in place