Co-Developing and Piloting Culturally-Responsive Informational Materials About Autism for Families of Young Children: Employing a Train-the-Trainer Implementation Model Within a Nonprofit Setting
试验速览
- 阶段
- 不适用
- 状态
- 已完成
- 入组人数
- 41
- 试验地点
- 1
- 主要终点
- Staff Training Feedback Survey of Implementation Properties (Self-report)
研究概览
简要总结
The goal of this clinical trial is to examine how helpful and relevant the Family Care Project workbook is for families from culturally and linguistically diverse backgrounds who have a young child at autism likelihood. The main questions this trial aims to answer are:
- Is the Family Care Project workbook useful for families?
- Is the Family Care Project workbook easy to use?
- Can the Family Care Project be implemented by non-profit workers who do not have health backgrounds?
Participants will complete surveys that elicit their feedback on their use of the workbook.
详细描述
Access to early, evidence-based autism-specific treatment can profoundly improve long-term outcomes for children with Autism Spectrum Disorder (ASD). However, current estimates reveal an eight-month to three-year gap between caregiver first concerns about their child's ASD-related behaviors and receipt of ASD-specific services. This prolonged time-period between caregiver first concerns and receipt of ASD-specific services is characterized by elevated parenting stress, increased child behavioral challenges, and reduced quality of life, even compared to families of children with non-ASD developmental concerns. Unfortunately, culturally and linguistically diverse (CALD) communities experience lengthier time-periods between first concerns and receipt of services, report increased difficulty accessing timely diagnostic and treatment services, and ultimately experience worse health outcomes compared to White communities. The investigators will partner with Mother Africa, a local non-profit organization, to 1) co-design culturally-responsive caregiver-focused educational materials to support CALD families with young children who have social communication delays or ASD and 2) develop a novel route for dissemination of information and materials within non-profit organizations, which are often the preferred entry-point for accessing healthcare information and services for underserved populations, rather than traditional medical facilities. The educational materials will support caregiver and child well-being by increasing caregiver knowledge and use of ASD specific parenting strategies as well as increasing caregiver awareness and use of local ASD resources. This planned research has the potential to effect programmatic changes in the services and settings available to support CALD communities during the early years of a child's ASD condition and thereby improve child and caregiver outcomes.
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
- 18 Years 至 85 Years（Adult, Older Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Has a child who screens at likelihood on the Ages and Stages Questionnaire
- •Speaks one of the following languages: Arabic, Mai Mai, Swahili, French, Tigrinya, Dari
排除标准
- 未提供
研究组 & 干预措施
Family Care Project workbook
Caregivers will be administered the Family Care Project workbook.
干预措施: Family Care Project (Behavioral)
结局指标
主要结局
Staff Training Feedback Survey of Implementation Properties (Self-report)
时间窗: 1 week after staff complete training in Family Care Project, which is 1 week before the pilot commences
Through a study-specific survey, staff will answer questions about the acceptability, feasibility, and appropriateness of the training. Staff will also have the opportunity to offer suggestions for improvements to the training curriculum. This questionnaire is administered online.
Staff Competence in Assisting Families With Children At-autism Likelihood Survey (Self-report)
时间窗: 1 week after implementation of Family Care Project with pilot families
Through a study-specific survey, staff will self-report their competence in identifying caregiver concerns, helping caregivers access services, providing new parenting strategies to caregivers, and helping caregivers set up a self-care plan. They will complete these questions via a survey and rate a score on a Likert scale of agreement with statements that reflect these topics. Higher scores indicate greater competence in assisting families with children at-autism likelihood. Scale title: Family Support Sister Self-Competence in Family Care Project Topics Minimum score: 1 Maximum score: 5
The Maternal Self-Efficacy Scale Questionnaire
时间窗: During the last session of the Family Care Project, which is approximately 4-6 weeks after the start of the pilot depending on family preferences
This questionnaire is a validated measure of caregivers' beliefs about their performance (i.e., self-efficacy) in caregiving tasks. Caregivers will fill out the survey online. They will complete these questions via a survey and rate a score on a Likert scale of agreement. Higher scores indicate greater maternal self-efficacy. Scale title: Maternal Self-Efficacy Scale Minimum score: 1 Maximum score: 4
Caregiver Knowledge and Use of Behaviors That Support Children at Autism-likelihood Survey
时间窗: During the last session of the Family Care Project, which is approximately 4-6 weeks after the start of the pilot depending on family preferences
Through a study-specific survey, caregivers will answer questions about their knowledge of child development, navigating appropriate child services, setting up a visual support, and creating a self-care plan. They will also answer questions about whether they have used a visual support or implemented a self-care routine. This survey is study-specific and created based on the curriculum topics. It will be filled out via online survey and caregivers will rate a score on a Likert scale of agreement with statements that reflect these topics. Higher scores indicate greater knowledge and use of behaviors to support children at autism-likelihood. Scale title: Caregiver Knowledge and Use Minimum score: 1 Maximum score: 5
Current Services Utilized by Families to Support Children at Autism-likelihood Survey
时间窗: During the last session of the Family Care Project, which is approximately 4-6 weeks after the start of the pilot depending on family preferences
Through a study-specific survey, caregivers will answer questions about their child's developmental diagnostic evaluations or current developmental services in the community. They will complete the survey online.
Family Care Project Feedback Survey of Implementation Properties
时间窗: During the last session of the Family Care Project, which is approximately 4-6 weeks after the start of the pilot depending on family preferences
Through a study-specific survey, mother africa staff and caregivers will answer questions about the acceptability, feasibility, and appropriateness of the Family Care Project and suggestions for revisions. They will fill out questions on an online survey. It will be filled out via online survey and all participants will rate a score on a Likert scale of agreement with statements about the acceptability, feasibility, and/or appropriateness of the Family Care Project. Higher scores indicate greater acceptability, feasibility, and/or appropriateness of the Family Care Project. Scale title: Family Care Project Feedback Minimum score: 1 Maximum score: 5
次要结局
未报告次要终点
研究者
Hannah Benavidez
Graduate Fellow, School of Medicine: Pediatrics
University of Washington