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The National Survey of Children with Special Health Care Needs Chartbook 2001, Maternal and Child Health Bureau, Health Services and Research Administration, U.S. Department of Health and Human Services The National Survey of Children with Special Health Care Needs
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Home | Table of Contents | Introduction | Prevalence of CSHCN |
Health and Functional Status of CSHCN
| Health Insurance Coverage |
Health Care Needs and Access to Care
| Care Coordination | Family-Centered Care | Impact on Families | State Data Pages | Appendix | Footnotes

Family-Centered Care

In this Section:
Components of Family-Centered Care | Family-Centered Care

Family-centered care is an approach to the planning, delivery, and evaluation of health care whose cornerstone is active participation between famillies and professionals. Family-centered care recognizes that families are the ultimate decisionmakers for their children, with children gradually taking on more and more of this decision-making themselves.

When care is family-centered, services not only meet the physical, emotional, developmental, and social needs of children, but also support the family’s relationship with the child’s health care providers and recognize the family’s customs and values. When care is truly family-centered, therefore, the provider:

  • Spends enough time with the family;
  • Listens carefully to the parents;
  • Makes the parent feel like a partner in the child’s care;
  • Is sensitive to the family’s values and customs; and
  • Provides the specific information that the parent needs.

This section describes the percentage of CSHCN whose care is reported to meet each of these five criteria, as well as the percentage whose care is reported to be lacking in at least one area.

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Components of Family-Centered Care

Graph: Percent of CSHCN Not Receiving Family-Centered Care [d]

The survey defined family-centered care using five criteria: whether or not the child’s provider spends enough time with the family, listens carefully to the parents, makes the parent feel like a partner in their child’s care, is sensitive to the family’s values and customs, and provides the specific information that the parent needs.

According to their parents, more than a third of CSHCN received care that lacks at least one of these five components. The one component reported missing most frequently is the provision of information; over 19 percent of CSHCN have providers who did not usually provide their families with the information they say they need. Over 16 percent of CSHCN have providers who did not always spend enough time with the child. The criterion most often met is that providers listen carefully to parents, but 12 percent of CSHCN receive care in which parents feel that this never or only sometimes occurs.

Graph: Receipt of Family-Centered Care by CSHCN [d]


Over 19 percent of CSHCN have providers who do not usually provide their families with the information they need.

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Family-Centered Care

Graph: Percent of CSHCN Lacking One or More Components of Family-Centered Care: Income [d]
*Federal Poverty Level

The likelihood of receiving family-centered care varies across demographic groups. Children in families with higher incomes are more likely than children in lower-income families to report that their care meets all five criteria: more than half of children in poor families receive care that is reported to lack at least one component of family-centered care, compared to one quarter of children in high-income families.

Race/ethnicity is also a factor in children’s receipt of family-centered care: non-Hispanic Black and Hispanic children are more likely to feel that their care is not family-centered than non-Hispanic White children. Twenty-nine percent of non-Hispanic White children receive care that does not meet all five criteria for family-centeredness, compared to 48 percent of Hispanic children and nearly 43 percent of non-Hispanic Black children.

Graph: Percent of CSHCN Lacking One or More Components of Family-Centered Care: Race/Ethnicity [d]


Graph: Percent of CSHCN Lacking One or More Components of Family-Centered Care: Impact of Child's Condition on Functional Ability [d]

The likelihood of receiving family-centered care appears to vary based on the impact of the child’s condition on his or her abilities. Among children who are never affected by their conditions, 24 percent receive care that is not family-centered, while among those who are affected usually, always, or a great deal in their abilities, more than 46 percent lack one or more aspects of family-centered care.

Parents of uninsured children are the most likely to report that their children’s care is not family-centered. Just over half of parents of uninsured CSHCN reported that their children’s care lacked at least one component of family-centeredness, compared to 28 percent of parents whose children are privately insured.

Graph: Percent of CSHCN Lacking One or More Components of Family-Centered Care: Insurance [d]

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Home | Table of Contents | Introduction | Prevalence of CSHCN |
Health and Functional Status of CSHCN
| Health Insurance Coverage |
Health Care Needs and Access to Care
| Care Coordination | Family-Centered Care | Impact on Families | State Data Pages | Appendix | Footnotes