Publications

New Pediatric Intensive Care Unit (PICU) Continuity Consensus Standards offer practical guidance for how hospitals and providers can best support children with medical complexity and their families when they have prolonged stays in intensive care. These standards have been endorsed by the Society of Critical Care Medicine.

A national study identified best practices within children's hospitals for strengthening the representativeness of Patient and Family Advisory Councils (PFACs) and for partnering with patient and family advisors on Diversity Equity and Inclusion (DEI) initiatives. This resource highlights six key areas and provides examples from the field to help hospitals improve DEI in PFACs. 

This document was created in response to an overwhelming demand for resources on paid family caregiving. State laws, policies, and regulations vary greatly across the country. The information provided here reflects paid family caregiving options that are currently available or under consideration. 

This issue brief provides an overview of the telehealth response to COVID-19, outlines temporary state policy flexibilities that improved access to pediatric telehealth services, and highlights opportunities for permanent state policy expansions to maintain access to pediatric telehealth services within Medicaid now that the COVID-19 public health emergency has ended.

This issue brief reviews the importance of continuity of coverage for all children now that the COVID-19 public health emergency has ended, and highlights state opportunities to improve eligibility and enrollment policies and procedures.

The unwinding of the COVID-19 public health emergency means states must redetermine eligibility for millions of children and families. Partnering with community-based organizations, family-led organizations, and individuals with lived experience to engage their communities can help support efforts to ensure continuity of coverage. This issue brief provides recommendations for states work with these organizations to mitigate coverage loss.

This opinion piece from Oregon Pediatric Improvement Partnership (OPIP) highlights a model of health complexity they developed and offers recommendations for how to strategically use data to begin eliminating health disparities.

Family involvement in the education of clinicians has the potential to improve patient-clinician partnerships in care. Meaningful partnership between families and clinicians requires intentional planning and a shared understanding of goals. This article describes one example, the seminar series Collaborative Conversations with Families to Advance the Clinical Care of Children with Medical Complexities (C6), a continuing medical education endeavor jointly designed and implemented by families and clinicians.

The value of incorporating families’ lived experience in systems-level activities is well understood by health care providers and policymakers. However, little detail exists in the literature about what information and supports are needed to assist families and professionals throughout the process of engaging with families. In this article, researchers present a framework for family engagement grouped into four action-oriented domains: commitment, transparency, representation, and impact. Adoption of this framework by child-serving entities will support a sustainable, equitable, and meaningful process in which families can contribute to policy development and improvement.