Families of children and youth with special health care needs (CYSHCN) have unique perspectives about the complexities of systems of care because they are involved with so many aspects of these systems. As their children's primary caregivers, families are deeply affected by systems-level issues, such as care fragmentation, which are often a direct result of ineffective or outdated health care policies and practices. Families' lived experiences make them uniquely qualified to partner in shaping systems-level policies that can improve systems of care for all children, especially CYSHCN. Family Voices is a national, non-profit, family-led organization that works to promote quality health care for all children and youth, particularly those with special health care needs and those from diverse communities. To explore strategies for ensuring, enhancing, and supporting the meaningful engagement of families at the systems level of health care, Family Voices conducted an environmental scan of existing literature and a series of key informant interviews with family leaders and professionals. This Issue Brief summarizes what we learned from these activities, describing barriers to effective family engagement and identifying four domains and corresponding key criteria that provide a framework for considering how well organizations and agencies are engaging families.
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