Autism Family Empowerment Coaching and Training Program (AFECT): Evaluating a Parent Coaching and Family Navigation Program for New Autism Spectrum Disorder Diagnosis
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 143
- 试验地点
- 2
- 主要终点
- Stress Level
研究概览
简要总结
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.
详细描述
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.
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.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 干预模型
- Single Group
- 主要目的
- Supportive Care
- 盲法
- None
入排标准
- 年龄范围
- 12 Months 至 60 Months（Child）
- 性别
- All
- 接受健康志愿者
- 否
入选标准
- •1. Parents of children just diagnosed with autism (with or without other diagnoses) 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).
排除标准
- •Non-legal guardians or foster parents who provide care to children newly diagnosed with autism.
- •Parents of children without diagnosis of autism.
研究组 & 干预措施
Coaching Group
Coaching Group will receive Project AFECT intervention, in addition to treatment as usual.
干预措施: Autism Family Empowerment Coaching and Training Program (Behavioral)
结局指标
主要结局
Stress Level
时间窗: From enrollment to the end of intervention at 6 months
Mean change from baseline in parental stress level measured using Parental Stress Scale (PSS). Overall possible scores on the scale range from 18 - 90. The higher the score, the higher the measured level of parental stress (worse outcome).
Self-Efficacy
时间窗: From enrollment to the end of intervention at 6 months
Mean change from baseline in parental self-efficacy measured using Autism-Specific Parenting Self-Efficacy Scale (PSEaS). Overall possible scores on the scale range from 17 - 85. The higher the score, the higher the measured level of parental self-efficacy (better outcome).
次要结局
- Child's Language Development(From enrollment to the end of intervention at 6 months)
- Child's Language Development(From enrollment to the end of intervention at 6 months)
- Access to autism treatments(From enrollment to the end of intervention at 6 months)
- Access to early intervention/special education(From enrollment to the end of intervention at 6 months)
研究者
Heidi M. Feldman
Professor of Developmental and Behavioral Pediatrics, Stanford University School of Medicine
Stanford University