Autism Spectrum Disorder, Mental Health Services
Conditions
Keywords
Autism, Navigator, Services, Children, Low-resource
Brief summary
The purpose of this study is to develop and test a family navigator training and an app (a technology-based treatment support system) for low-resourced families of young children (aged 3-5) with autism. The hypothesis is that the navigator training and treatment support system will help enable navigators to support families of young children with autism in accessing needed services.
Detailed description
The purpose of this project is to determine whether access to a family service navigator/treatment support system improves outcomes among families of young children (aged 3-5) from low-resourced communities. Pilot work includes interviews and pre/post surveys. Then, a randomized controlled trial will be conducted by randomly assigning families to navigators/treatment support systems or the non-personalized comparison condition (information, training, and referral services). Three-month, six-month, and nine-month follow-up survey data will be collected. Each of the 20 navigators will support two families. Intervention families will have access to the navigator and the treatment support system, which includes a dashboard showing their child's service needs, resources, and a platform to facilitate and document communication between navigators and families. The treatment support system will also allow the navigator supervisor to ensure fidelity of the navigators' support to the family. The statistician will randomize 55 families who meet the inclusionary criteria to each condition--40 individuals will receive navigator/treatment support system (intervention group) and 15 individuals will receive information, training, and referrals (comparison group).
Interventions
BEHAVIORALAccess to a Family Service Navigator and Treatment Support System
An RCT will be conducted. 40 participants will be randomly assigned to the intervention group and 15 participants to the non-personalized comparison group (i.e., information, training, and referral). The intervention group will have access to a navigator and the treatment support system.
Sponsors
Vanderbilt University
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
NONE
Intervention model description
Later in the project, a randomized controlled trial will be conducted. 40 participants will be in the intervention group and 15 participants will be in the non-personalized comparison group (i.e., information, training, and referral). Families will complete pre/post measures related to: intervention targets (except the ability to facilitate knowledge), service delivery outcomes, adaptive and maladaptive behavior, and autism symptoms. Information will also be collected via the treatment support system; such information will include the type and frequency of communication between the navigator and the family. Individual interviews will be collected with the navigator supervisor and the 20 navigators to identify barriers to the navigator model for low-resourced families.
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
For the families in the clinical trial, there are the following inclusion and
Exclusion criteria
Inclusion criteria: * Be a parent who is in some way from a low-resourced community, * Be the parent a child with autism between the ages of 3-5, * Be age 18 or older, * Want assistance with navigating service delivery systems, * Be English speaking or Spanish-speaking, * Be able to provide informed consent, * Own a phone which can use the treatment support system (or be provided a phone from the Public Assistance Office or from the grant)
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Change in Knowledge at 9 months | At the pre-survey and at the nine-month survey | Called the Autism Knowledge Scale, a multi-item measure examining knowledge of autism services. There are 24 items with higher scores indicating more knowledge. Scale ranges from 0-24. |
| Change in Skills at 9 months | At the pre-survey and at the nine-month survey | Called the Comfort with Advocacy Scale, A multi-item measure examining skills to identify, access, and receive services. There are 12 items with higher scores indicating greater advocacy. Scale ranges from 0 to 60. |
| Change in Advocacy at 9 months | At the pre-survey and at the nine-month survey | Called the Advocacy Skills Scale, a multi-item measure examining the frequency of advocacy activities. There are nine items with higher scores indicating greater advocacy. Scale ranges from 9 to 45. |
| Change in Empowerment at 9 months | At the pre-survey and at the nine-month survey | Called the Family Empowerment Scale, aa multi-item measure examining empowerment in family, services, and community/political environments. There are 34 items with higher scores indicating greater empowerment. Scale ranges from 0 to 136. |
| Change in Parenting self-efficacy at 9 months | At the pre-survey and at the nine-month survey | Called the Self-Efficacy scale, a multi-item measure examining competence in parenting. There are nine items with higher scores indicating greater self-efficacy. Scale ranges from 0 to 36. |
| Change in Service Delivery Outcomes | At the pre-survey and at the three-month, six-month, and nine-month survey | Called the adapted service measure scale, access to the type, number, and quality of services and unmet service needs. There are over 20 services with higher scores indicating needing greater services. Scale ranges from 0 to 20. |
| Change in Adaptive and maladaptive behavior at 9 months | At the pre-survey and at the nine-month survey | Called the Vineland Adaptive Behavior Scale, a multi-item measure examining adaptive and maladaptive behavior. There are 100 items with higher scores indicating greater adaptive behavior. Scale ranges from 0 to 100. |
| Change in Social responsiveness at 9 months | At the pre-survey and at the nine-month survey | Called the Social Responsiveness Scale, a multi-item measure to examine social responsiveness. There are sixty items with higher scores indicating greater social responsiveness. Scale ranges from 0 to 180. |
Countries
United States
Contacts
PRINCIPAL_INVESTIGATORMeghan Burke, PhD
Vanderbilt University
Outcome results
None listed