Trauma-Informed Leadership in Quality Improvement: What We Learned From Practicing in a Pandemic.

In 2020, midway through the Collaborative Improvement and Innovation Network to Advance Care for Children with Medical Complexity project, the coronavirus disease 2019 pandemic erupted and caused significant disruptions for the 10 participating state teams, the project leadership, and collaborative partner organizations. Clinics shut down for in-person care, a scramble ensued to quickly leverage telehealth to fill the gap, and the trauma caused by anxiety, isolation, and exhaustion affected the health and wellbeing of children, families, and clinicians alike. We conducted a series of key informant interviews and surveys, alongside other process measures, to learn from state teams what it was like "on the ground" to try to continue improving care delivery, child quality of life, and family wellbeing under such upheaval. In this article, we synthesize qualitative and descriptive findings from these varied data sources within the framework of the trauma-informed principles we applied as a leadership team to prevent burnout, increase resilience, and maintain progress among all project participants, especially clinicians and the uniquely vulnerable family leaders. Lessons learned will be offered that can be applied to future natural and human-made emergencies that impact responsive pediatric care delivery improvement.

Therapy use for U.S. school-aged children with developmental disabilities: State variation and determinants.

BACKGROUND: Therapy services can support developmental needs, improve social emotional outcomes, and reduce persistent health inequities for children with developmental disabilities (DD). Receipt of therapy services may be especially timely when children with DD are school-aged, once diagnosis has often occurred. Yet limited knowledge exists on geographic variability and determinants of therapy use among school-aged U.S. children with DD. OBJECTIVES: We aimed to (1) determine if therapy use varies significantly by state and (2) examine associations of health determinants with therapy use among U.S. school-aged children with DD. METHODS: This was a secondary analysis of 2016 and 2017 National Survey of Children's Health data. The sample included 9984 children with DD ages 6-17 years. We obtained odds ratios and predicted margins with 95% confidence intervals from multilevel logistic regression models to examine therapy use variation and determinants. RESULTS: Overall, 34.6% of children used therapy services. Therapy use varied significantly across states (σ2 = 0.11, SE = 0.04). Younger age, public insurance, functional limitations, individualized education program, frustration accessing services, and care coordination need were associated with higher adjusted odds of therapy access. In states with Medicaid Home and Community-Based Services waivers, higher estimated annual waiver cost was associated with lower adjusted odds of therapy use. CONCLUSIONS: Results highlight geographic disparities in therapy use and multilevel targets to increase therapy use for school-aged children with DD.

Health Literacy and Health Outcomes Among Children With Developmental Disabilities: A Systematic Review.

Developmental disabilities (DDs) are prevalent and associated with health disparities among children. Family health literacy of parents and/or children is one modifiable factor associated with child health; however, little is known about family health literacy for children with DDs. This systematic review was conducted to determine evidence on associations of health literacy with health outcomes among children with DDs. Medline, CINAHL, Embase, ERIC, PsycInfo, and Web of Science were searched through August 2018. Of 2,768 unique records, 53 full text articles were reviewed and four articles were included. Associations of family health literacy with health outcomes among children with DDs were mixed. Future research should include more diverse samples, greater breadth in health outcomes assessed, and increased methodological rigor.

Families' Experiences With Family Navigation Services in the Autism Treatment Network.

BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

An open resource for transdiagnostic research in pediatric mental health and learning disorders.

Technological and methodological innovations are equipping researchers with unprecedented capabilities for detecting and characterizing pathologic processes in the developing human brain. As a result, ambitions to achieve clinically useful tools to assist in the diagnosis and management of mental health and learning disorders are gaining momentum. To this end, it is critical to accrue large-scale multimodal datasets that capture a broad range of commonly encountered clinical psychopathology. The Child Mind Institute has launched the Healthy Brain Network (HBN), an ongoing initiative focused on creating and sharing a biobank of data from 10,000 New York area participants (ages 5-21). The HBN Biobank houses data about psychiatric, behavioral, cognitive, and lifestyle phenotypes, as well as multimodal brain imaging (resting and naturalistic viewing fMRI, diffusion MRI, morphometric MRI), electroencephalography, eye-tracking, voice and video recordings, genetics and actigraphy. Here, we present the rationale, design and implementation of HBN protocols. We describe the first data release (n=664) and the potential of the biobank to advance related areas (e.g., biophysical modeling, voice analysis).