Families have underused expertise as health care system users. Providers and organizations can successfully use this knowledge by cultivating a culture of family-centered care. This invokes models of partnership with families in the care of children with medical complexity (CMC), as well as in the design and improvement of care delivery systems.
These concepts informed a guiding principle for the CARE Award (see Appendix A) and challenged participating teams. They found that aspiring to true family-centered care required a deep and pervasive cultural change among all care delivery team members and across all systems in which they work. As one CARE QI team member related, “We thought we were practicing family-centered care until we were asked to partner with families differently in the CARE Award.”