Parent perspectives on education to support hospital discharge for children with invasive mechanical ventilation.

Background: Children with invasive mechanical ventilation (IMV) often live at home, but for safety, parents must be prepared to assume primary responsibility for all aspects of their child's medically complex care. Prior studies have described discharge education programs, however often without perspectives of parents with lived experience transitioning home.

Purpose: To describe parent perspectives on hospital-based education for discharging home a child with IMV.

Autism and neurodevelopmental disability risks in children with tracheostomies and ventilators.

Background/objective: Infants who survive prematurity and other critical illnesses and require continued invasive mechanical ventilation (IMV) postdischarge (at home) are at high risk of developmental delays and disabilities. Studies of extremely preterm cohorts (<28-week gestation) demonstrate rates of 25% for intellectual disability (ID) and 7% for autism spectrum disorder (ASD). Rates of ASD and ID in children with IMV are unknown.

Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

Objective: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships.

Newborn Screening for Neurodevelopmental Disorders May Exacerbate Health Disparities.

Newborn screening (NBS) began in the early 1960s with screening for phenylketonuria on blood collected on filter paper. The number of conditions included in NBS programs expanded significantly with the adoption of tandem mass spectrometry. The recommended uniform screening panel provides national guidance and has reduced state variability.

Home health nurses for children with invasive mechanical ventilation (IMV): Perspectives on gaps and opportunities for recruitment.

Background: Children with medical complexity (CMC) dependent on invasive mechanical ventilation (IMV) often require private duty home nursing; however, there are ubiquitous shortages. Home health is an especially vulnerable nursing sector because of less competitive wages and less prominence during nursing education. We sought to understand nurses' perspectives on gaps and opportunities for recruiting home care nurses for children with IMV.

Diagnosis of autism in a rare case of tyrosine hydroxylase deficiency: a case report.

Background: Tyrosine hydroxylase deficiency (THD) is a rare movement disorder with broad phenotypic expression caused by bi-allelic mutations in the TH gene, which encode for tyrosine hydroxylase (TH) protein. Some patients with THD have improvement in dystonia with carbidopa-levodopa, a synthetic form of dopamine typically used in Parkinson's disease, and are considered to have dopa-responsive THD. THD has been found in 0.

Paying Family Medical Caregivers for Children's Home Healthcare in Colorado: A Working Medicaid Model.

Objective: To compare the characteristics and healthcare use of children with medical complexity who receive paid certified nursing assistant (CNA) care by a family member (family CNA) and by a traditional nonfamily member (nonfamily CNA).

Study Design: This was retrospective cohort study of children who received CNA care through Colorado's Medicaid paid family caregiving program between 2017 and 2019 by a home healthcare agency. We compared patient characteristics between the family CNA and nonfamily CNA groups.

Early childhood developmental skills of children with tracheostomies and ventilators recently discharged home.

Background: Infants who survive prematurity and critical illnesses but require ongoing invasive mechanical ventilation (IMV) are at high risk for developmental disabilities. However, their detailed developmental profiles are largely unknown.

Objective: To understand the developmental profiles of a cohort of young children with IMV after hospital-to-home transition.

Prevalence of and Spending on Ear, Nose, Throat, and Respiratory Infections Among Children With Chronic Complex Conditions.

Objective: Ear, nose, throat, and respiratory infections (ENTRI) may affect children with complex chronic conditions (CCC) differently than their peers. We compared ENTRI prevalence and spending in children with and without CCCs.

Methods: Retrospective analysis of 3,880,456 children ages 0-to-18 years enrolled in 9 US state Medicaid programs in 2018 contained in the IBM Watson Marketscan Database.

PICU Survivorship: Factors Affecting Feasibility and Cohort Retention in a Long-Term Outcomes Study.

Our understanding of longitudinal outcomes of Pediatric Intensive Care Unit (PICU) survivors is limited by the heterogeneity of follow-up intervals, populations, and outcomes assessed. We sought to demonstrate (1) the feasibility of longitudinal multidimensional outcome assessment and (2) methods to promote cohort retention. The objective of this presented study was to provide details of follow-up methodology in a PICU survivor cohort and not to present the outcomes at long-term follow-up for this cohort.

A Literature Review of Feeding Disorders in Children with Tracheostomies and Ventilators.

Feeding disorders and gastrostomy use are highly prevalent in children with invasive mechanical ventilation (IMV) due to both common risk factors (eg, prematurity, neurological disorders) and resultant experiential deprivation (eg, long hospitalizations, delayed feeding experiences). Feeding in children with IMV is complicated by the presence of a tracheostomy, lung vulnerability, and medical complexity. The potential comorbidity of swallowing difficulties (dysphagia) and atypical early feeding experiences can result in complex feeding disorders.

Parent education programs for children assisted by invasive mechanical ventilation: A scoping review.

Problem: The population of children assisted by invasive mechanical ventilation (IMV) and living at home is growing. Although parent education is essential for safe transitions from hospital-to-home, little is known about how this education is delivered. The aim of this review is to identify existing literature about parent education programs, synthesize the evidence, and identify gaps in the literature for future inquiry.

The Role of Care Coordinators for Children with Respiratory Technologies and Home Nursing.

Children with respiratory technologies, particularly those with mechanical ventilation, represent a growing population that require complex home nursing, medical equipment, outpatient medical and habilitative supports to live and thrive in their community. Care coordination is essential to support these children and their families to navigate and integrate key community-based health and educational services, however, care is often fragmented and care coordination needs unmet. Therefore, to fully support children with respiratory technologies, it is critical to understand the role of care coordinators (CCs) and how to sustain this workforce.

Understanding the Barriers to Receiving Autism Diagnoses for Hispanic and Latinx Families.

Significant disparities exist in early identification of autism spectrum disorder (ASD) for Hispanic and Latinx children. ASD prevalence estimates are approximately identical for White and Black children but lower for Hispanic and Latinx children. Reasons for these racial and ethnic variations are likely multifactorial.

Home Health Care Utilization in Children With Medicaid.

Background: Although many children with medical complexity (CMC) use home health care (HHC), little is known about all pediatric HHC utilizers. Our objective was to assess characteristics of pediatric HHC recipients, providers, and payments.

Methods: We conducted a retrospective analysis of 5 209 525 children age 0-to-17 years enrolled Medicaid in the 2016 IBM Watson MarketScan Medicaid Database.

Outcome Measures Following Critical Illness in Children With Disabilities: A Scoping Review.

Children with disabilities compose a substantial portion of admissions and bed-days in the pediatric intensive care unit (PICU) and often experience readmissions over time. Impacts of a PICU admission on post-discharge health status may be difficult to distinguish from pre-existing disability in this population. Efforts to standardize outcome measures used for children with disabilities may help identify morbidities associated with PICU hospitalizations.

Understanding Racial and Ethnic Disparities in Autism-Related Service Use Among Medicaid-Enrolled Children.

Racial and ethnic disparities in the use of nine common autism-related services among Medicaid-enrolled children with autism spectrum disorder (ASD) were examined, distinguishing between school and other community-based outpatient settings. Using 2012 Medicaid Analytic Extract data, we identified 117,848 continuously enrolled children with ASD. Several racial and ethnic disparities were found, varying by geography.

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives.

Objectives & Hypothesis: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios.

Discharge Practices for Children with Home Mechanical Ventilation across the United States. Key-Informant Perspectives.

In 2016, the American Thoracic Society released clinical practice guidelines for pediatric chronic home invasive ventilation pertaining to discharge practices and subsequent management for patients with invasive ventilation using a tracheostomy. It is not known to what extent current U.S.

Readmission drivers for children with medical complexity: Home nursing shortages cause health crises.

Objective: Children with medical technology dependence (MTD) are frequently readmitted to the hospital. However, due to their medical fragility, it is often difficult to untangle the root causes for readmissions to identify the most effective preventive approaches. We sought to explore environmental and family factors driving hospital readmissions for children with MTD.

Unmet Respite Needs of Children With Medical Technology Dependence.

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers.

Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation.

Objective: To assess the reasons for discharge delays for children with long-term mechanical ventilation.

Study Design: Charts of children (0-18 years of age) with a new tracheostomy in the Pulmonary Habilitation Program at the Ann and Robert H. Lurie Children's Hospital of Chicago were retrospectively reviewed for demographic information, medical diagnoses, medical stability, discharge to home, reasons for discharge delay, and hours of staffed home nursing.