Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a
significant impact. The diagnostic odyssey undertaken as part of having a child with RD is …

Abstract Families of children and youth with special health care needs (CYSHCN) can face
challenges with regard to health and well-being. Health systems are designed to support …

Abstract When the 2010 Patient Protection and Affordable Care Act (ACA) was passed, it
fundamentally changed end-of-life care for children. Concurrent Care for Children (ACA …

Background The 2010 Patient Protection and Affordable Care Act (ACA) mandated
landmark hospice care legislation for children at end of life. Little is known about the impact …

Objectives The authors' objective is to present an overarching framework of an analytic
ecosystem using diverse data domains and data science approaches that can be used and …

Introduction and objectives The complex chronic condition (CCC) is an increasingly
prevalent reality in pediatrics. However, having a CCC does not necessarily mean being a …

Objective Children with medical complexity (CMC) and their caregivers are at increased risk
for multiple psychosocial stressors that can impact child and family well‐being and health …

Purpose Pediatric hospice is a comprehensive model of care for medically complex children
at end of life. The Affordable Care Act changed regulatory requirements for pediatric …

Family nursing researchers are charged with addressing the conceptual and methodological
underpinnings of family research when developing family-focused interventions. Step-by …

BACKGROUND: To assess the overlap and admission or transfer rate of children with
chronic complex conditions (CCC) and with mental or behavioral health (MBH) disorders …