Project AFECT (Autism Family Empowerment Coaching and Training Program)

Stanford University

Status: Enrolling

Conditions: Autistic Disorder; Autistic Disorders Spectrum; Autistic Spectrum Disorders; Autism Spectrum Disorder; Autistic Spectrum Disorder; Autism Spectrum Disorders; Autism

Treatments: Behavioral: Autism Family Empowerment Coaching and Training Program

Study type: Interventional

Funder types: Other

Identifiers

NCT05910502

IRB#69103

Details and patient eligibility

About

The goal of this clinical trial is to learn about the journey of families after their child's diagnosis of autism and to help parents understand autism and get the right treatments for their child. This study is for parents of children just diagnosed with autism who are:

• Age greater than 1 and up to 5 years old;
• Hispanic/Latino OR Black/African-American OR have Medi-Cal as primary health insurance; AND
• Live in one of the following counties in California (Alameda, Contra Costa, Marin, Monterey, Napa, San Benito, San Francisco, San Mateo, Santa Clara, Santa Cruz, Solano, or Sonoma).

The main questions it aims to answer are:

• Whether parent coaching through Project AFECT leads to decreased parental stress and increased parental confidence;
• Whether family navigation through Project AFECT leads to increased number of referrals to early intervention and educational services and reduced wait times to autism treatments;
• Whether children whose parents receive Project AFECT intervention show increased language skills compared to children whose parents did not receive intervention.

Participants will be asked to:

• Complete surveys at enrollment and 3 and 6 months later.
• Work with Project AFECT Coach.

Researchers will compare control and intervention groups to see if Project AFECT leads to improved parent and child outcomes.

Full description

This is a prospective clinical effectiveness study of Project AFECT, an intervention combining parent coaching and family navigation. Parents who meet inclusion criteria will be invited to participate in this study at the time of their child's autism diagnosis at Stanford Medicine Children's Health.

Participants in the control group will receive treatment as usual. In addition to treatment as usual, participants in the intervention group will be connected with Project AFECT Coaches who will provide: Coaching to (1) assure parents understand diagnosis, (2) assist parents in finding accurate, current information about autism, (3) guide parents to free online autism training resources, (4) empower parents to evaluate child's intervention plan holistically, and (5) provide emotional support to reduce stress; Navigation to (1) help family access autism treatments, and (2) connect to early intervention and educational services.

Enrollment: 120 estimated patients

Sex: All

Ages: 12 to 60 months old

Volunteers: No Healthy Volunteers

Inclusion criteria

1. Parents of children just diagnosed with autism (with or without other diagnoses) who are:

2. Age greater than 1 and up to 5 years old;

3. Hispanic/Latino OR Black/African-American OR have Medi-Cal as primary health insurance; AND

4. Live in one of the following counties in California (Alameda, Contra Costa, Marin, Monterey, Napa, San Benito, San Francisco, San Mateo, Santa Clara, Santa Cruz, Solano, or Sonoma).

Exclusion criteria

• Non-legal guardians or foster parents who provide care to children newly diagnosed with autism.
• Parents of children without diagnosis of autism.

Trial design

Primary purpose: Supportive Care

Allocation: Non-Randomized

Interventional model: Crossover Assignment

Masking: None (Open label)

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120 participants in 2 patient groups

Treatment As Usual Group

No Intervention group

Description:

This group will receive treatment as usual.

Coaching Group

Experimental group

Description:

Coaching Group will receive Project AFECT intervention, in addition to treatment as usual.

Treatment:

Behavioral: Autism Family Empowerment Coaching and Training Program