• Research & Reports

    Strengthening the Diversity and Role of Patient and Family Advisory Councils: Opportunities for Action

    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. 

  • Fact Sheets

    Medicaid Paid Family Caregiving for Children

    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. 

  • Issue Briefs

    Working With Community-Based Organizations and Individuals with Lived Experience to Support Continuity of Coverage at the End of the COVID-19 Public Health Emergency

    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.

  • Issue Briefs

    Maintaining Telehealth Access to Medicaid-Covered Pediatric Services After the End of the COVID-19 Public Health Emergency

    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.

  • Journal Articles

    Access and Quality of Pediatric Home Healthcare: A Systematic Review

    An increasing number of children and youth with special health care needs are considered medically complex and require extensive medical care. The American Academy of Pediatrics has identified the home/family environment as the ideal place for these children to receive long-term care. But what do we know about the quality and accessibility of home health care for children?

  • Journal Articles

    Family Partnership in Continuing Medical Education: A Collaborative Experience

    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.

  • Journal Articles

    Family Engagement at the Systems Level: A Framework for Action

    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.