PALO ALTO – Four grants recently awarded by the Lucile Packard Foundation for Children’s Health will provide funding to create standards for continuity of care in pediatric intensive care units (PICUs), promote telehealth use, bolster self-management supports for families, and expand media coverage of children’s issues.
Pediatric Intensive Care Unit Continuity Strategies Conference and Guidelines Formulation
Grantee: Columbia University Medical Center
Children with medical complexity often require care in pediatric intensive care units (PICUs), and some have prolonged PICU stays that last weeks or months, which pose tremendous obstacles and stress for patients, families, providers, and institutions. Long-stay patients (LSP) also have higher rates of medical errors, morbidity, and mortality than other patients. Currently, there are no agreed-upon standard practices to ensure continuity of care for LSP, and existing strategies, are underutilized and understudied. This grant will support a project to define and widely disseminate standards and guidelines for high-quality PICU care through a multi-disciplinary convening that can improve outcomes for LSP, their families, and providers.
The AFFIRM 2021 Study (Assessing Family-Friendly Care in Self-Management)
Grantee: The Regents of the University of California, San Francisco
Caregivers of children with special health care needs (CSHCN) must obtain and coordinate services from multiple providers. These providers can assist families by offering Self-Management Supports (SMS) to help them set realistic goals, create action plans, and navigate health care and social services systems. Though SMS are associated with improved outcomes, they are underdeveloped and underused in pediatric practices. This grant will fund a study designed to develop and pilot a survey instrument to collect information about SMS needs from families of CSHCN in California whose conditions are medically complex and who have low income, are non-English speaking, or identify as racial or ethnic minorities. The grant goals are to produce a survey instrument suitable for broad-scale use and to distill lessons learned about research methodologies with vulnerable patient populations to inform wider application.
Promoting Telehealth to Address Barriers to Care for Children of Color with Special Health Care Needs in California
Grantee: The Children’s Partnership
The COVID-19 pandemic has elevated the need to use telehealth as a tool to facilitate health services for children with special health care needs (CSHCN), particularly children of color. Yet many CSHCN face barriers to care, and families often are not aware of opportunities to access care via telehealth. Building on previous telehealth grants to The Children’s Partnership, this grant will support improved access to care for families of color with CSHCN in California. The funds will be used to promote greater understanding and utilization of telehealth, and to build awareness and support among policymakers and the public regarding current telehealth policies and barriers, implementation practices, and recommendations for change.
Media Coverage of Children with Special Health Care Needs in California
Grantee: California Health Report
Improving the system of care for children with special health care needs requires public and policymaker awareness of key issues affecting these children and their families. This grant will renew ongoing support to the California Health Report to produce in-depth news and feature stories to generate discussion on policy issues facing CSHCN. Funds also will support wider statewide dissemination of the content produced, and development of a column written by a parent.
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.