Family-centered care is based on the recognition that children live within the context of families, which may include biological, foster, and adoptive parents, step-parents, grandparents, other family caregivers, and siblings. Family-centered care is a process to ensure that the organization and delivery of services, including health care services, meet the emotional, social, and developmental needs of children; and that the strengths and priorities of their families are integrated into all aspects of the service system. For example, family-centered care supports families as they participate as integral partners in the medical home and work with their children’s health care providers in making informed health care decisions. Family-centered care recognizes that families are the ultimate decision-makers for their children, with children gradually taking on more and more of this responsibility as they mature.

The family partnership outcome was evaluated using a series of questions in the NS-CSHCN about families’ role in decision-making: how often doctors discuss a range of treatment options with families, how often they encourage parents to ask questions about their child’s care, how often they make it easy for parents to ask questions, and how often doctors respect parents’ choices about their child’s health care. The parents of over 80 percent of CSHCN answered “usually or always” to each of these four questions. This percentage is lower, however, among children whose conditions consistently affect their activity; among these children, the parents of approximately three-quarters reported that their children’s providers usually or always meet each criterion for partnership in decision-making.

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