Family Support Program for Autism
Recruiting in Palo Alto (17 mi)
Age: < 65
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: Boston Medical Center
Disqualifiers: Non-English/Spanish speakers, Independent living, others
No Placebo Group
Approved in 1 Jurisdiction
Trial Summary
What is the purpose of this trial?
A randomized controlled trial will be conducted to determine the effects of an adapted family-centered autism transition intervention called Transitioning Together/Juntos en la Transición on meaningful outcomes for families. The study will occur in a safety net hospital setting. The adapted version of this multi-family group psychoeducation intervention is delivered across one individual family joining session and four 2.5 hour multi-family group sessions. The parent and youth groups are held in separately, at the same time.
Will I have to stop taking my current medications?
The trial information does not specify whether participants need to stop taking their current medications.
What data supports the effectiveness of the treatment Transitioning Together (TT) / Juntos en la Transicion (JET) for autism?
Is the Family Support Program for Autism, also known as Transitioning Together, safe for participants?
How is the Transitioning Together treatment unique for autism?
Transitioning Together is unique because it is a multi-family group psychoeducation program specifically designed to reduce family stress and improve social interactions for adolescents with autism and their families. Unlike other treatments, it focuses on the family environment and provides a platform for families to interact and support each other during the transition to adulthood.12489
Eligibility Criteria
This trial is for families with a youth aged 14-21 diagnosed with autism, who have visited BMC since 2015 and are in high school or specialized schooling. Parents must be comfortable with English/Spanish and live with the youth.Inclusion Criteria
For youth: Currently live at home with a parent/legal guardian
I am a parent and I am at least 21 years old.
My parent or legal guardian meets the required criteria.
See 6 more
Exclusion Criteria
The autistic youth currently resides independently, in supported housing, or with a foster family or other Department of Children and Families (DCF) placement
Both my child and I agree to participate in the study.
My family's primary language at home is neither English nor Spanish.
Trial Timeline
Screening
Participants are screened for eligibility to participate in the trial
2-4 weeks
Intervention
Participants receive the Transitioning Together intervention, consisting of one individual family joining session and four 2.5-hour multi-family group sessions
5 weeks
5 sessions (in-person or virtual)
Follow-up
Participants are monitored for changes in quality of life, transition readiness, and other outcomes
3-12 months
Treatment Details
Interventions
- Transitioning Together (TT) / Juntos en la Transicion (JET) (Behavioral Intervention)
- Usual autism transition care (Behavioral)
Trial OverviewThe study tests 'Transitioning Together/Juntos en la Transición,' an intervention involving one family session and four group sessions to improve outcomes for families dealing with autism transitions.
Participant Groups
2Treatment groups
Experimental Treatment
Active Control
Group I: Transitioning TogetherExperimental Treatment1 Intervention
Participants in this arm will receive the Transitioning Together intervention in English or Spanish either at BMC, at BMC's Supporting Parents \& Resilient Kids (SPARK) Center or on BMC Zoom.
Group II: Usual CareActive Control1 Intervention
Participants in this arm will receive a referral to usual transition-related care through the BMC Developmental and Behavioral Pediatrics (DBP) clinic/the BMC Autism Program.
Transitioning Together (TT) / Juntos en la Transicion (JET) is already approved in United States for the following indications:
🇺🇸 Approved in United States as Transitioning Together for:
- Supporting families of adolescents on the autism spectrum in transitioning to adulthood
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
Boston Medical CenterBoston, MA
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Who Is Running the Clinical Trial?
Boston Medical CenterLead Sponsor
Deborah Munroe Noonan Memorial Research FundCollaborator
References
The family context of autism spectrum disorders: influence on the behavioral phenotype and quality of life. [2021]This article reports the findings from a longitudinal program of research examining the bidirectional influences of the family environment on the behavioral phenotype of autism, and describes a newly developed family psychoeducation program, titled Transitioning Together, designed to reduce family stress, address behavior problems, and improve the overall quality of life of adolescents with autism and their families. A case study is presented that illustrates how Transitioning Together helps reduce family stress and improve the overall quality of the family environment. The article concludes with a discussion of directions for future research on best practices in working with families of children, adolescents, and adults with autism.
Evaluation of the effectiveness of an online transition planning program for adolescents on the autism spectrum: trial protocol. [2020]The transition from high school to post-secondary education and work is difficult for adolescents on the autism spectrum. Transition planning can be an effective way of supporting adolescents on the autism spectrum to prepare for leaving school and to succeed in obtaining employment; however, there is a need for an autism-specific transition planning program with proven effectiveness. This paper describes a trial protocol for evaluating the Better OutcOmes & Successful Transitions for Autism (BOOST-A™); an online interactive program that empowers adolescents on the autism spectrum to plan their transition from school to further study, training, or employment.
Transitioning youth with autism spectrum disorders and other special health care needs into adult primary care: A provider survey. [2021]The transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement many components of transition best practices for youth with autism and other chronic conditions, highlighting the urgent need for enhanced medical coordination and additional transition training and resources.
Transitioning Together: A Multi-family Group Psychoeducation Program for Adolescents with ASD and Their Parents. [2019]Currently there are few evidence-based programs available for families of individuals with ASD during the transition to adulthood. The present study provided a preliminary evaluation of a multi-family group psychoeducation intervention using a randomized waitlist control design (n = 41). Families in the intervention condition participated in Transitioning Together, an 8-week program designed to reduce family distress and improve social functioning for adolescents. Findings indicated significant improvements in parental depressive symptoms and problem solving from pre- to post-intervention for parents in the intervention condition but not for parents in the control condition. Social interactions also improved for youth in the intervention condition relative to controls. Parents reported satisfaction with the program and particularly valued the opportunity to interact with other families.
Process Evaluation of the BOOST-A™ Transition Planning Program for Adolescents on the Autism Spectrum: A Strengths-Based Approach. [2019]A process evaluation was conducted to determine the effectiveness, usability, and barriers and facilitators related to the Better OutcOmes & Successful Transitions for Autism (BOOST-A™), an online transition planning program. Adolescents on the autism spectrum (n = 33) and their parents (n = 39) provided feedback via an online questionnaire. Of these, 13 participants were interviewed to gain in-depth information about their experiences. Data were analyzed using descriptive statistics and thematic analysis. Four themes were identified: (i) taking action to overcome inertia, (ii) new insights that led to clear plans for the future, (iii) adolescent empowerment through strengths focus, and (iv) having a champion to guide the way. The process evaluation revealed why BOOST-A™ was beneficial to some participants more than others. Trial registration #ACTRN12615000119594.
Implementation of a multi-family autism transition program in the high school setting. [2022]Transitioning Together is an intervention that supports families of adolescents on the autism spectrum as they prepare for the transition to adulthood. While it has been delivered successfully and shown to result in positive outcomes for families in the university setting, questions remain about whether and how well it can be widely provided to families in real-world settings such as high schools. In this study, we analyzed predictors, facilitators, and barriers to providing Transitioning Together to families at 30 high schools across three US states, all of which received training from a team of researchers to deliver this intervention. Our findings highlight struggles and successes with real-world use of the intervention. Seventeen of the 30 schools were successful in providing Transitioning Together to families. Schools who had higher community socioeconomic status, higher quality family involvement, and higher quality transition planning programming before changing anything for this study were much more likely to provide this new intervention to families. Schools who used the intervention were mostly able to deliver it as designed and received positive feedback from families who participated. Common parts of the intervention that schools struggled with most included following the structure of the sessions, including group problem-solving and dialogue in the sessions, and collecting feedback from families. Future research is needed to learn how to make it even easier for public high schools and other service systems to provide this intervention to families, in a way that also maximizes its effectiveness and accessibility for historically underserved autism spectrum populations.
Disrupted Care Continuity: Testing Associations between Social Networks and Transition Success for Children with Autism. [2022]Children with autism situated in lower income families often receive intensive educational interventions as their primary form of treatment, due to financial barriers for community interventions. However, the continuity of care can be disrupted by school transitions. The quality of social relationships during the transition to a new school among parents, school staff and community providers, called the team-around-the-child (TAC), can potentially buffer a child with autism from the adverse effects caused by care disruptions. Qualities of social relationships, including trust and collaborative problem solving, can be measured using social network analysis. This study investigates if two different types of TAC relationships, defined as (1) the level of trust among team members and (2) the degree of collaborative problem solving among team members, are associated with perceived successful transitions for children with autism from lower income families. Findings suggested that TAC trust is significantly associated with the outcome of transition success for children with autism immediately post-transition.
Effectiveness of the BOOST-A™ online transition planning program for adolescents on the autism spectrum: a quasi-randomized controlled trial. [2022]The majority of existing transition planning programs are focused on people with a disability in general and may not meet the specific need of adolescents on the autism spectrum. In addition, these interventions focus on specific skills (e.g. job readiness or self-determination) rather than the overall transition planning process and there are methodological limitations to many of the studies determining their effectiveness. The Better OutcOmes & Successful Transitions for Autism (BOOST-A™) is an online program that supports adolescents on the autism spectrum to prepare for leaving school. This study aimed to determine the effectiveness of the BOOST-A™ in enhancing self-determination.
"Don't Promise Something You can't Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism. [2023]Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.