Family-Centered Care for US Children with Special Health Care Needs

Who Gets What and Why?

This article examines racial/ethnic and language-based disparities in family-centered care for children with special health care needs. Family-centered care provides medical care that is supportive of the relationships between patients, families and health-care providers. Latino, African-American, and non-native English speakers report lower levels of family-centered care for families with children with special health care needs.

The authors conducted a multivariate logistic regression analysis using data from the 2005-2006 National Survey of Children with Special Health Care Needs, a telephone survey conducted by the National Center for Health Statistics. The data set contained parental information about 40,723 children with special health care needs. Levels of family-centered care were measured by several parent-reported variables, including how much time spent doctors spent with patients, quality of listening, level of sensitivity to family values, ability to provide useful information, and effort to make family feel like a partner in patient care.

Key Findings:

  • Sixty-six percent of all children with special health care needs who had visited a doctor at least once in the past year received family-centered care.
  • Latino (47%) and African-American (53%) children were substantially less likely to receive family-centered care than White children (72%).
  • While disparities persisted through all levels of severity between White and Latino children, there was no significant difference in the rates of family-centered care between White and African-American children with severe limitation of activity.
  • Children from families who spoke a language other than English as their primary language were less likely to receive family-centered care than children from English-speaking families (34% versus 67%).

This research suggests that children with special health care needs are less likely to receive family-centered care if they are Latino, African-American, or come from a family who does not speak English as their primary language. Reducing disparities in family-centered care may help to reduce disparities in health outcomes for children.

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