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| ID | Type | Description | Link |
|---|---|---|---|
| K23MH141316 | U.S. NIH Grant/Contract | View source |
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| Name | Class |
|---|---|
| National Institute of Mental Health (NIMH) | NIH |
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The goal of this study is to test the effectiveness of the FANS-EI program in supporting caregiver engagement in caregiver-mediated early interventions for young children with autism. This study also examines caregiver-perceived social support and self-efficacy and FANS-EI implementation outcomes (feasibility, acceptability, appropriateness).
Caregiver involvement in early intervention (EI) goal setting and intervention delivery aligns with Part C of the Individuals with Disabilities Education Act (IDEA) guidelines. Active participation from caregivers significantly influences intervention adherence and ultimately affects child outcomes. When caregivers struggle with obtaining a diagnosis and early intervention services, low caregiver engagement can further exacerbate these challenges. In fact, the attrition rate for parent-mediated early interventions for autism ranges from 35% to 62%. Therefore, it is crucial to develop effective strategies for supporting caregiver engagement in autism early intervention. This study aims to examine the effectiveness of a social-support enhancement program, called Family/Friend Network Support for Early Intervention (FANS-EI), designed to improve caregiver engagement in community-based autism EI. This program has been adapted in collaboration with community partners from a text-based program that has successfully increased engagement and patient outcomes in diabetes treatment. Families of toddlers diagnosed with autism or a high likelihood of autism, will either receive EI as usual or FANS-EI plus EI. FANS-EI utilizes a strengths-based approach, leveraging existing family and friend support networks. Supporters, alongside caregivers, will receive information about autism or social communication development, along with text messages from the research team. These messages are designed to foster interactions between supporters and caregivers, providing emotional, informational, and educational support. The project will examine caregiver-perceived social support, self-efficacy, and implementation outcomes. Ultimately, the goal is to enhance caregiver engagement, maximizing the benefits of early interventions for both caregivers and their autistic children. This project would help further the knowledge of improving caregiver engagement in community-partnered research while addressing the persistent challenges in service utilization and child outcomes.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Treatment as usual | Active Comparator | Families receive early intervention as usual |
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| FANS-EI | Experimental | FANS-EI supporters and caregivers will receive text messages from the research team three times a week. The messages to supporters mirror the caregiver messages and will include educational/motivational messages. Supporter will receive asynchronized general educational materials about autism (including characteristics of autism, understanding child's behaviors, etc.). Supporters will have the option, but will not be required, to attend EI sessions with the family if the family agrees. |
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| FANS-EI | Behavioral | Social support related text messages delivered to supporters and caregivers; asynchronized educational materials for supporters. |
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| Measure | Description | Time Frame |
|---|---|---|
| Parent Participatory Engagement Measure | The 5-item Parent Participatory Engagement Measure (PPEM) examines caregiver comfort with, engagement and participation in the intervention. | Weekly for 6 months |
| Measure | Description | Time Frame |
|---|---|---|
| Caregiver Buy-In to EI | The extent to which caregivers value the changes called for by the EI, believe the EI is good for their child, and believe that the EI creates positive change in their child) on a 6-point Likert scale (1 = Strongly Disagree to 6 = Strongly Agree) | baseline, 6 months |
| Parenting Sense of Competence Scale |
| Measure | Description | Time Frame |
|---|---|---|
| Coaching Practices Rating Scales | This measures practitioner use of coaching practices on a 5-point scale (1 = None of time to 5 = all of the time). | Baseline, 2nd and 4th months, 6 months |
| Frequency of contact |
Providers' eligibility criteria
Caregiver/Child Dyads eligibility criteria
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of California, Davis MIND Institute | Sacramento | California | 95817 | United States |
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| ID | Term |
|---|---|
| D001321 | Autistic Disorder |
| ID | Term |
|---|---|
| D000067877 | Autism Spectrum Disorder |
| D002659 | Child Development Disorders, Pervasive |
| D065886 | Neurodevelopmental Disorders |
| D001523 | Mental Disorders |
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| ID | Term |
|---|---|
| D018479 | Early Intervention, Educational |
| ID | Term |
|---|---|
| D002662 | Child Health Services |
| D003153 | Community Health Services |
| D006296 | Health Services |
| D005159 | Health Care Facilities Workforce and Services |
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| Early Intervention | Behavioral | Treatment as usual provided by community-based autism early intervention agencies |
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A 17-item caregiver self-report questionnaire measures the degree to which caregivers feel competent and confident in parenting their children (i.e., efficacy) and their satisfaction with parenting. Items are rated on a 6-point Likert scale |
| Baseline, 6 months |
| Social Support Index | A 17-item measure of caregiver-reported social support, rated on a 5-point Likert scale (1=Strongly Disagree to 5=Strongly Agree). | Baseline, 6 months |
| Acceptability of Intervention Measure | The 5-item Acceptability of Intervention Measure (AIM) will be used to measure acceptability of FANS-EI on a 5-point Likert scale (1 = completely disagree to 5 = completely agree). | 6 months |
| Intervention Appropriateness Measure | The 4-item Intervention Appropriateness Measure (IAM) will be used to measure appropriateness of FANS-EI on a 5-point Likert scale (1 = completely disagree to 5 = completely agree). | 6 months |
| Feasibility of Intervention Measure | The 4-item Feasibility of Intervention Measure (FIM) will be used to measure feasibility of FANS-EI on a 5-point Likert scale (1 = completely disagree to 5 = completely agree). | 6 months |
Frequency of contact between the supporter and the caregiver
| Baseline, weekly until exit at 6 months |
| Vineland Adaptive Behavior Scales-3 | This measures adaptive behaviors on a 3-point Likert scale (0 = never, 1 = sometimes, 2 = usually or often). | Baseline, 6 months |
| MacArthur-Bates Communicative Development Inventory | MacArthur-Bates Communicative Development Inventory (CDI) assesses caregiver-reported communicative development in young children (8 - 37 months), including vocabulary, gesture, and emergence and expansion of grammatical features. | Baseline, 6 months |
| Qualitative Interview | Conduct semi-structured interviews with providers, caregivers, and supporters to examine the implementation outcomes. | 6 months |
| Usability of Intervention Measure | The 3-item Usability of Intervention Measure will be used to measure usability of FANS-EI using open ended questions. | 6 months |
| D011314 | Preventive Health Services |