PALO ALTO – Easing adolescents’ transition to adult health care, encouraging families to participate more fully in research, and assessing the impact of COVID-19 on children with special health care needs are the topics of three grants recently awarded by the Lucile Packard Foundation for Children’s Health.
Pediatric-to-Adult Health Care Transition Quality Measurement
National Alliance to Advance Adolescent Health (NAAAH)/Got Transition
Without a structured transition process from pediatric to adult care, youth with special health care needs can experience gaps in care leading to problems with medication compliance, adverse health outcomes, diminished quality of life, and preventable emergency room and hospital use. A key barrier to effective transition is the absence of measures to understand whether transition has occurred, and if so, how well. This grant will support development and dissemination of guidance on appropriate transition quality measures. The grant builds on a previous Foundation grant to NAAAH that funded development of financial incentive models to encourage collaboration between pediatric and adult clinicians to implement structured approaches to transition.
Best Practices for Engaging Patient, Youth, & Family Leaders as Research Partners
University of Colorado Denver CYSHCN National Research Network, in partnership with Family Voices
While the role of youth and family partners (YFP) has been expanding, defining the most effective strategies for YFP collaboration on research has lagged. This project will create a guide to help researchers, youth, and families understand the benefits of partnering on research projects and the nuances of successful partnership. The guide will aim to clarify the roles of YFPs, ensure that research questions reflect the needs of children, youth and families, and enhance understanding of how researchers and YFP can learn from each other to make studies more robust and actionable. This guide will be a follow-up to A Standard of Compensation for Youth and Family Partners.
Parenting in the Context of COVID-19
YouGov, in partnership with the Centers for Disease Control and Prevention, American Academy of Pediatrics, Prevent Child Abuse America, Tufts University, and the California Department of Public Health
This funding will ensure that the views and experiences of families of children with special health care needs are included in a national survey being conducted to assess the impact of COVID-19 on adverse and positive childhood experiences. The grant will support a set of five questions to assess the effects on the pandemic on CSHCN, and will provide an oversample of 1,500 families in California so that additional California-specific analysis can be completed. The survey will be fielded three times over the next nine months.
About the Foundation: The Lucile Packard Foundation for Children's Health is a public charity, founded in 1997. Its mission is to elevate the priority of children's health, and to increase the quality and accessibility of children's health care through leadership and direct investment. Through its Program for Children with Special Health Care Needs, the foundation supports development of a high-quality health care system that results in better health outcomes for children and enhanced quality of life for families. The Foundation works in alignment with Lucile Packard Children's Hospital Stanford and the child health programs of Stanford University.