Core Outcomes: Key Measures of Performance

Families of CSHCN partner in decision-making at all levels and are satisfied with the services they receive.

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 professionals in making informed health care decisions. Familycentered care recognizes that families are the ultimate decision-makers for their children, with children gradually taking on more and more of this decision-making as they mature.

This outcome was evaluated using two questions from the NS-CSHCN: whether the doctor makes the parent feel like a partner in the child’s care, and the parent’s level of satisfaction with the child’s health services. Children whose parents reported that they usually or always feel like a partner and that they are very satisfied with care were considered to meet the overall criterion. This outcome was achieved by 57.4 percent of CSHCN.

The greater the impact of the child’s condition on his or her functional ability, the less likely he or she is to have care that meets this criterion: 42 percent of children who are consistently or greatly affected by their conditions achieved this outcome, compared to 70 percent of children whose daily activities are never affected. Children in higher-income families were also more likely to receive family-centered care: nearly two-thirds of children with family incomes of 400 percent of poverty or more achieved this outcome, compared to 50 percent of children in poverty.

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