Parent and Provider Perspectives on Family Navigation for Early Identification of Children With Autism Spectrum Disorder

Early identification of autism spectrum disorder (ASD) is associated with improved cognitive and behavioral outcomes. Targeted strategies are needed to support equitable access to diagnostic services to ensure that children from low-income and racial/ethnic minority families receive the benefits of early ASD identification and treatment. To test the efficacy of family navigation (FN), an individually tailored, culturally informed care management strategy, to increase the likelihood of achieving diagnostic ascertainment among young children at risk for ASD. This randomized clinical trial of 249 families of children aged 15 to 27 months who had positive screening results for possible ASD was conducted in 11 urban primary care sites in 3 cities. Data collection occurred from February 24, 2015, through November 5, 2018. Statistical analysis was performed on an intent-to-treat basis from November 5, 2018, to July 27, 2020. Families were randomized to FN or conventional care management (CCM). Families receiving FN were assigned a navigator who conducted community-based outreach to families to address structural barriers to care and support engagement in recommended services. Families receiving CCM were assigned to a care manager, who did limited telephone outreach. Families received FN or CCM after positive initial screening results and for 100 days after diagnostic ascertainment. The primary outcome, diagnostic ascertainment, was measured as the number of days from randomization to completion of the child's clinical developmental evaluation, when a diagnosis of ASD or other developmental disorder was determined. Among 250 families randomized, 249 were included in the primary analysis (174 boys [69.9%]; mean [SD] age, 22.0 [3.5] months; 205 [82.3%] publicly insured; 233 [93.6%] non-White). Children who received FN had a greater likelihood of reaching diagnostic ascertainment over the course of 1 year (FN, 108 of 126 [85.7%]; CCM, 94 of 123 [76.4%]; unadjusted hazard ratio [HR], 1.39 [95% CI, 1.05-1.84]). Site (Boston, New Haven, and Philadelphia) and ethnicity (Hispanic vs non-Hispanic) moderated the effect of FN (treatment × site interaction; P = .03; Boston: HR, 2.07 [95% CI, 1.31-3.26]; New Haven: HR, 1.91 [95% CI, 0.94-3.89]; and Philadelphia: HR, 0.91 [95% CI, 0.60-1.37]) (treatment × ethnicity interaction; P < .001; Hispanic families: HR, 2.81 [95% CI, 2.23-3.54] vs non-Hispanic families: HR, 1.49 [95% CI, 1.45-1.53]). The magnitude of FN's effect was significantly greater among Hispanic families than among non-Hispanic families (diagnostic ascertainment among Hispanic families: FN, 90.9% [30 of 33], and CCM, 53.3% [16 of 30]; vs non-Hispanic families: FN, 89.7% [35 of 39], and CCM, 77.5% [31 of 40]). Family navigation improved the likelihood of diagnostic ascertainment among children from racial/ethnic minority, low-income families who were detected as at risk for ASD in primary care. Results suggest differential effects of FN by site and ethnicity. ClinicalTrials.gov Identifier: NCT02359084.

Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder's effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test "real-world" implementation of family navigation. We randomly assigned 275 children aged 16-30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families' access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.

This study aimed to identify determinants influencing the utilization of early intervention services among young children with sickle cell disease (SCD) based on perspectives from medical and early intervention providers. Early intervention and medical providers from the catchment area surrounding St. Jude Children's Research Hospital and Washington University were recruited (20 total providers). Interviews were completed over the phone and audio recorded. All interviews were transcribed verbatim, coded, and analyzed using inductive thematic analysis. Three overarching themes were identified from both groups: Awareness (e.g., lack of awareness about the EI system and SCD), Access (e.g., difficulties accessing services), and Communication (e.g., limited communication between medical and early intervention providers, and between providers and families). Although these three themes were shared by medical and early intervention providers, the differing perspectives of each produced subthemes unique to the two professional fields. Early intervention services can limit the neurodevelopmental deficits experienced by young children with SCD; however, most children with SCD do not receive these services. The perspectives of early intervention and medical providers highlight several potential solutions to increase early intervention utilization among young children with SCD.

Emerging evidence suggests that autism spectrum disorder (ASD) can be diagnosed by age 18 months and that early intensive behavioral intervention positively affects ASD core deficits. This pilot randomized controlled trial examined the feasibility of using an adapted form of patient navigation, Family Navigation (FN), to improve timely diagnosis of ASD in low-income families from racial-ethnic minority groups. Forty children referred for an ASD diagnostic assessment were randomly allocated to receive FN or usual care. The primary outcome, time to diagnostic resolution, was assessed with survival analysis. Nineteen of 20 FN children completed the diagnostic assessment, compared with 11 of 19 children receiving usual care (hazard ratio=3.21, 95% confidence interval=1.47-6.98, p<.01). In regard to engagement of participants, 17 of 20 families (85%) met with the navigator for the targeted three in-person visits (median=4, range 1-9). FN may be a promising intervention to address barriers that impede timely ASD diagnosis.

Part C early intervention (EI) providers are at the front line of service provision for children under 3years old with developmental delays or disabilities. As such, they can play a key role in both the early detection of autism spectrum disorder (ASD) and the provision of ASD-specialized treatment. Focus groups were conducted with 25 EI providers from three agencies in a Northwestern U.S. county to understand their role in the identification of ASD and communication about ASD concerns to families. Results revealed the tension that providers experience between maintaining a positive and supportive relationship with families and raising the issue of possible ASD. Cultural influences affecting ASD care and suggestions for desired resources were also discussed.

When a parent learns of their child's autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver's needs to coordinate and navigate systems of care after learning of their child's autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child's diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews (n = 42), expert feedback (n = 13), and quality improvement strategies (n = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.

Early Signs

BackgroundDespite the known benefits of early, specialized intervention for toddlers with Autism Spectrum Disorder (ASD), access to such intervention remains limited. This pragmatic trial examines a novel healthcare delivery model (Screen-Refer-Treat [SRT]), which capitalizes upon existing health care and early intervention (EI) infrastructure to increase community capacity for ASD detection and treatment before age 3, when it is likely to have the greatest impact. This model comprises three components: (1) universal use of Stage 1 ASD screening by primary care providers (PCPs) at 18-month well-child visits (i.e., Screen); (2) immediate referral of positive screens to a community-based EI program (i.e., Refer); and (3) provision of an inexpensive, evidence-based ASD-specialized treatment by EI providers, after verifying ASD risk with a Stage 2 screen (i.e., Treat). This paper describes our research design and the initial successes, challenges, and adaptations made during the early implementation phase.Method/designA stepped-wedge cluster RCT was used to implement the SRT model sequentially in four diverse Washington State counties (“clusters”). Counties are randomly assigned to the time of receipt of the SRT intervention, which comprises training workshops and technical assistance focused on the use of evidence-based ASD screening and intervention tools. Separate cohorts of families with toddlers (16–35 months old) with and without ASD concerns are recruited before and after the SRT intervention from participating PCP practices and EI programs. PCPs and EI providers complete measures on their screening, referral, and intervention practices before and after the SRT intervention. Each family cohort completes surveys about their well-being, parenting efficacy, health care satisfaction, and toddler’s social-communicative behaviors.ConclusionThis trial is the first of its kind to work simultaneously with two service delivery systems with the goal of improving early detection and treatment for ASD. Our approach was successful in attaining buy-in from PCPs and EI providers, building and maintaining partnerships with providers, and achieving high levels of retention and survey completion. Fostering provider engagement and problem-solving issues together as partners were integral to overcoming the main challenges. Numerous lessons have been learned thus far, which have applicability for implementation researchers in ASD and those in other fields.Trial registrationThe registration number for this trial is NCT02409303 and it was posted on ClinicalTrials.gov on April 6, 2015.

The American Telemedicine Association ATA 2017 Telehealth 2.0 Conference Abstracts.

There is growing interest in Family Navigation as an approach to improving access to care for children with autism spectrum disorder, yet little data exist on the implementation of Family Navigation. The aim of this study was to identify potential failures in implementing Family Navigation for children with autism spectrum disorder, using a failure modes and effects analysis. This mixed-methods study was set within a randomized controlled trial testing the effectiveness of Family Navigation in reducing the time from screening to diagnosis and treatment for autism spectrum disorder across three states. Using standard failure modes and effects analysis methodology, experts in Family Navigation for autism spectrum disorder (n = 9) rated potential failures in implementation on a 10-point scale in three categories: likelihood of the failure occurring, likelihood of not detecting the failure, and severity of failure. Ratings were then used to create a risk priority number for each failure. The failure modes and effects analysis detected five areas for potential "high priority" failures in implementation: (1) setting up community-based services, (2) initial family meeting, (3) training, (4) fidelity monitoring, and (5) attending testing appointments. Reasons for failure included families not receptive, scheduling, and insufficient training time. The process with the highest risk profile was "setting up community-based services." Failure in "attending testing appointment" was rated as the most severe potential failure. A number of potential failures in Family Navigation implementation-along with strategies for mitigation-were identified. These data can guide those working to implement Family Navigation for children with autism spectrum disorder.

Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.

P150 Development of an 8-Week Early Childhood Nutrition Education Intervention for Children with Autism Spectrum Disorder and their Parents

Background:Early intervention (EI) providers work with parents of children with or who have risk factors of developmental delay or disability through Part C of the Individuals with Disabilities Education Act. Many parents in the United States have low health literacy; therefore, EI providers should be aware of and address families' health literacy needs. EI providers need to be health literate themselves to implement evidence-based recommended practices.Objective:This study aimed to measure health literacy levels of interdisciplinary EI providers and investigate associations between health literacy levels and demographic variables.Methods:A survey containing the Health Literacy Questionnaire (HLQ) was completed by EI providers working at 10 EI centers in Massachusetts. Scale scores were calculated and compared across demographic variables, including EI job role, age, years of EI experience, and highest education level.Key Results:Of 715 EI providers invited to participate, 376 surveys were completed (52.6% response rate). Most participants were women (92.6%, n = 348), reported race as White (85.4%, n = 321), had a mean age of 43.1 years (standard deviation [SD] 12.9) ranging from 20 to 74 years, and English as their primary language (89.6%, n = 337). EI providers scored the lowest on HLQ Scale 5 “Appraisal of health information” (mean [M] = 2.99 (SD 0.50) [confidence interval (CI) 2.93, 3.04]), and Scale 7 “Navigating the healthcare system” (M = 3.83 (SD 0.58) [CI 3.77, 3.89]). EI providers having stronger health literacy profiles were generally older, with a higher education level, were licensed providers, or had more years of EI work experience.Conclusions:EI providers require adequate health literacy to manage their health needs and to effectively provide services to EI families. Study results may inform future targeted professional development to support improvement of EI providers' health literacy skills, including appraisal of health information and navigation of the health care system. [HLRP: Health Literacy Research and Practice. 2022;6(2):e128–e136.]Plain Language Summary:EI providers' health literacy profiles have not been previously investigated. Study results reveal EI providers struggled with health literacy skills of appraising health information and navigating the health care system, which are vital for EI practice. Health Literacy Questionnaire results can inform targeted professional development to improve EI providers' health literacy levels and their clinical practice.

Effect of Family Navigation on Participation in Part C Early Intervention.

Are We There Yet? The State of Early Prediction and Intervention in Autism Spectrum Disorder