New Grants: Learning to Care for Children with Complexity, Engaging Diverse Families in Policymaking

PALO ALTO – A grant recently awarded by the Lucile Packard Foundation for Children’s Health will support a series of seminars to allow care providers and families to share their knowledge on how to care for children with medical complexity (CMC). A second grant will fund Project Leadership, a program that offers training for families of children with special health care needs (CSHCN) to become meaningfully involved in policymaking, with a special emphasis on engaging diverse families.

The grants:

Addressing Clinical Challenges in the Care of Children with Medical Complexity
Grantee: Hospital for Sick Children, Toronto

Children with medical complexity often have multi-system involvement and multiple comorbidities, leading to challenges in providing care. Many of these challenges must be managed both in a clinical setting and by family caregivers in their homes. An absence of published clinical research on optimal treatment represents a significant gap in knowledge, often leading to suboptimal care. Also, pediatric training focused on CMC is minimal. This grant will support a seminar series to allow family caregivers and clinicians to learn from one another, share specialized and innovative clinical practices, and discuss critical issues that families face managing care in the home. The series will also encourage a community of practice of clinicians and families, and will promote additional research that focuses on this population of children.

Project Leadership Phase VI: Engaging Diverse Families for Health Systems Improvement
Grantee: Family Voices of California

Incorporating families’ lived experience with children with special health care needs into program and policy planning is a strategy increasingly used by health care systems to ensure delivery of appropriate services, enhance consumer and provider satisfaction, and reduce costs. Since 2013, the foundation has supported Family Voices of California to implement Project Leadership, a community-based training program designed to increase the number of family representatives able to effectively participate in advisory and decision-making roles within programs serving CSHCN. This grant will continue to make advocacy training for parents of CSHCN available in California, with a focus on improved cultural responsiveness and increasing the diversity of participants in trainings and in subsequent leadership roles.

 

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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 with Special Health Care Needs. We invest in creating a more efficient 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 lpfch.org/CSHCN.