Helping families of children with special health care needs monitor and manage the care of their children is the focus of grants (PDF) awarded November 11 by the Lucile Packard Foundation for Children's Health.
"Families are always at the center of caring for children with complex medical conditions," said Edward Schor, MD, senior vice president at the foundation. "It is imperative to support them as they navigate the complex health system that serves these children."
* Lucile Packard Children's Hospital Stanford will help parents develop skills in managing their child's condition by establishing a state-wide Parent Mentor Learning Collaborative in California. Parent mentors typically are veteran parents of children with chronic or complex conditions who share their experiences and navigational strategies with parents of newly diagnosed children. The grant project will support the education, training and ongoing support of parent mentors in 10 child health institutions around the state, and will develop and test a parent mentor training curriculum.
* The Center for Health Policy Research at UCLA will study the caregiver burden of families caring for children with chronic and complex health problems, and identify how health care providers can assist families in managing their responsibilities.
* A grant to Boston Children's Hospital/Harvard will support ongoing work to identify, develop and test best practices for hospital discharge for children with medical complexity, to ensure better care at home and reduce readmissions. Prior foundation support led to the development of a framework to initiate, structure, monitor and complete pediatric discharge processes.
A fourth grant, to advocacy organization Children Now, will support development of strategic action plans to address policies that affect the health of children with special health care needs. These will include coordination of physical and behavioral health services; promotion of family and youth involvement in state health care planning; and facilitating collaboration among public agencies providing services for children with special needs.