Autism Spectrum Disorder, Family Relations
Conditions
Brief summary
The goal of this clinical study is to develop a community-based program to support family members of transition-aged youth on the autism spectrum to help them plan for the future. The main aims of the study are: 1. To develop the Families FORWARD program 2. To conduct proof-of-concept testing of the Families FORWARD program Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program.
Detailed description
The Families FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program aims to increase family members' active planning for the transition to adulthood in the context of autism. The program is designed to enable flexible delivery for families of youth who are diverse across autism features, co-occurring conditions, service needs, cultural values and preferences, and readiness to engage in planning. The program will be delivered collaboratively with community organizations that support individuals on the autism spectrum and/or their families. The current project aims to conduct proof-of-concept testing with a culturally-diverse sample of families of transition-aged youth on the autism spectrum. Parents / primary caregivers will participate in 6-7 individual, personalized sessions that incorporate aspects of skill-building (communication, goal-setting, problem-solving, systems navigation), education about services, and motivational interviewing. Youth will be invited to participate in 3 of the sessions along with their parent / primary caregiver. Participants will complete surveys before and after participating in the program and will participate in exit interviews at the end of the program. The investigators will assess indicators of acceptability, feasibility, and improvement on proposed mediators and outcomes.
Interventions
BEHAVIORALFamilies FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD)
Families FORWARD aims to engage families in planning for adulthood earlier and more actively. Program skills include communication and problem-solving; guided practice in setting realistic goals, breaking down goals into incremental action steps, and problem-solving barriers to goal attainment; repeated engagement in future-oriented communication; and training on how to navigate transition-related and adult services. Parents/caregivers will participate in six or seven telehealth sessions (60-75 minutes each). Youth on the autism spectrum will have the option of participating in up to three program sessions to increase collaborative planning within the family. Families will identify and work toward individualized transition planning goals that may fall within any area of planning or functioning (e.g., housing, education, guardianship).
Sponsors
Boston University Charles River Campus
Deborah Munroe Noonan Memorial Research Fund
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
14 Years to No maximum
Healthy volunteers
Yes
Inclusion criteria
* Family Inclusion Criteria 1. Parents or primary caregivers of transition-aged youth on the autism spectrum: 1. Have one or more child(ren) on the autism spectrum who is/are ages 14-21 years old 2. Identify as the parent, legal guardian, and/or primary caregiver of the youth 3. Speak English fluently 4. Reside in Massachusetts 2. Youth on the autism spectrum: 1. Have an autism diagnosis OR identify as autistic 2. Age 14-21 3. Have ability to communicate verbally or in written format in English 4. Reside in Massachusetts
Exclusion criteria
none
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Families FORWARD Program Acceptability Form | Within 2 weeks post-intervention (i.e., 3-4 months after enrollment). | Parents/caregivers (and youth, when applicable) completed the Program Acceptability scale which assess acceptability, appropriateness, and feasibility of the FamiliesFORWARD program. Item scores range from 1 to 5. The measure was scored by a total summation; total scores range from 12 to 60. Higher scores are associated with higher perceptions of intervention acceptability, appropriateness, and feasibility. |
| Transition Planning Activities Measure | Within 2 weeks post-intervention (i.e., 3-4 months after enrollment). | The Transition Preparation Activities Measure (T-PAM) was the outcome measure used to assess parents' readiness for their youth's transition to adulthood after completing the Families FORWARD intervention. Item scores range from 1 to 5. Total scores on the measure range from 14 to 70, with higher scores associated with higher transition readiness. Parents/caregivers completed an online version of the T-PAM following completion of the Families FORWARD intervention. |
Countries
United States
Baseline characteristics
| Characteristic | — |
|---|---|
| Age, Continuous | 51.79 years STANDARD_DEVIATION 6.02 |
| Race/Ethnicity, Customized Asian/Non-Latine | 0 Participants |
| Race/Ethnicity, Customized Black | 2 Participants |
| Race/Ethnicity, Customized Black/Latine | 0 Participants |
| Race/Ethnicity, Customized Latine/Mixed Race | 1 Participants |
| Race/Ethnicity, Customized White/Latine | 3 Participants |
| Race/Ethnicity, Customized White/Non-Latine | 5 Participants |
| Region of Enrollment United States | 11 Participants |
| Sex: Female, Male Female | 0 Participants |
| Sex: Female, Male Male | 1 Participants |
| Transition Preparation Activities Measure (T-PAM) | 0 units on a scale STANDARD_DEVIATION 0 |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 0 / 27 |
| other Total, other adverse events | 0 / 27 |
| serious Total, serious adverse events | 0 / 27 |
Outcome results
None listed