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Use of a family navigator in Families with Children Newly Diagnosed with Autism Spectrum Disorder

Final Report

Use of a family navigator in Families with Children Newly Diagnosed with Autism Spectrum Disorder Final Report (PDF)


  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)


The objective of this study is to determine whether use of an evidenced-based strategy, Patient Navigation, for families of young children newly diagnosed with autism spectrum disorders (ASDs), improves the services the children receive, decreases the burden of parenting stress, and improves family functioning. The study will be a randomized control trial involving 192 low-income and underrepresented minority families who have children under the age of six years with newly confirmed ASDs. Based on the 2009 Institute of Medicine (IOM) "100 Initial Priority Topics for Comparative Effectiveness Research" report that highlights comparing the effectiveness of therapeutic strategies for ASDs at different levels of severity and stages of intervention, this intervention will explore the comparative effectiveness of two methods of support to families immediately after their child is diagnosed with an ASD. The current national standard of care for children with ASDs and which includes enhanced family support, typically a clinician, resource support person, or legal advocate is the basis for our study's control arm. Children in the intervention arm will receive the assistance of a Family Navigator (FN), an enhanced patient navigator who not only helps families overcome barriers to receiving care, but also functions in a culturally competent manner to model effective advocacy within the systems families encounter. Consistent with previous studies of patient navigators, participants will be followed for six months. The intervention will be embedded in an urban specialty developmental assessment clinic, Early Intervention (EI) programs and the public school system. We aim to support families during this critical juncture when they are confronted with a new diagnosis and are asked to navigate a complex service system on their children's behalf. Data collection will include both quantitative and process measures to evaluate this intervention. To estimate the effect of the intervention, we will conduct an intention-to-treat analysis to compare the difference between intervention and control groups on major outcome variables (adequacy and number of hours). Specifically, we aim to: 1) Increase the proportion of children receiving adequate services defined as a minimum of 25 hours per week; 2) Increase the number of hours of services the child is receiving, as well as adherence to these hours by the family; 3) Shorten the length of time to receipt of services; and 4) Improve family psychological functioning. How a family navigates the first six months following diagnosis may positively influence its ability to cope with the disease for the remainder of the child's life. This regional study will determine if a novel application of the Patient Navigator principle can help newly diagnosed low-income and minority families obtain adequate and timely services for their children with newly diagnosed ASD and will be replicable nationally. Because reducing health disparities is a major priority of the U.S Healthcare System and the IOM, we focus exclusively on low-income, and largely underrepresented minority families.

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