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Three New Grants Address Health Equity for Children and Youth with Special Health Care Needs and Their Families

Projects focus on access to dental care, caregiver training in languages other than English, and diversity among patient and family advisers.


PALO ALTO – In its continuing work to advance health equity for children and youth with special health care needs (CYSHCN), the Lucile Packard Foundation for Children’s Health has awarded three new grants to fund groundbreaking research necessary for driving health care systems and policy change.


“Children and youth with special health care needs face many challenges in accessing care, whether it be due to a lack of providers, limited medical information in certain languages, not having adequate representation, discrimination, economic status, or geography,” said Holly Henry, director of the foundation’s Program for Children and Youth with Special Health Care Needs. “Our new grants will fill important knowledge and data gaps and provide the evidence policy makers and health care systems leaders need to improve policies and ensure more equitable access to care.”


The grants:


A National Study on the Oral Health and Dental Care Needs and Experiences of Children and Youth with Special Health Care Needs
Grantee: NORC at the University of Chicago
This foundational project will include the first comprehensive, national study of the oral health needs of CYSHCN and document disparities that exist in their access to dental care. This work will be a crucial first step toward driving policy and systems change for improving care and achieving more equitable oral and dental health outcomes for CYSHCN, who tend to have more oral health issues than other children and poorer access to care.


Optimizing Medical Device Education for Spanish-Speaking Caregivers of Children with Medical Complexity
Grantee: Stanford School of Medicine
Children with complex medical conditions often require medical devices, such as feeding or breathing tubes. Operating these devices correctly can mean the difference between life or death for CYSHCN, so effective training for caregivers is crucial. But what happens when caregivers who speak a language other than English receive medical device training without an interpreter present? This project will identify barriers to providing medical device education in languages other than English and assess whether caregivers feel prepared to use the devices after receiving training. The research team aims to generate data that will help address inequities in medical device education and ensure that fewer children with complex medical needs are readmitted to the hospital due to challenges with their life-saving devices.


Advancing DEI in Children’s Hospital Patient and Family Advisory Councils: Resources and Learning Community
Grantee: Institute for Patient- and Family-Centered Care
Patient and Family Advisory Councils (PFACs) are an invaluable way for hospitals and clinics to partner with their communities in developing, implementing, and evaluating policies and processes that support optimal care for all. But children’s hospitals report that recruiting and retaining PFAC members who reflect the diversity of their patient populations is a top challenge. In a previous project funded by the Lucile Packard Foundation for Children’s Health, the grantee identified promising practices for promoting diversity, equity, and inclusion in PFACs and unearthed a need for detailed implementation resources. This newly funded project will continue that work, resulting in a set of practical tools and resources for children’s hospitals to use in recruiting, onboarding, and retaining PFAC members who more accurately represent their patient populations.


The Lucile Packard Foundation for Children’s Health unlocks philanthropy to transform health for all children and families – in our community and our world. Support for this work was provided by the Foundation’s Program for Children and Youth with Special Health Care Needs. We invest in creating a more efficient and equitable system that ensures high-quality, coordinated, family-centered care to improve health outcomes for children and enhance quality of life for families. Learn more at