The survey asked several questions to determine whether CSHCN were receiving family-centered care:
- How often did your child’s doctors and other health care providers spend enough time with him/her?
- How often did you get the specific information you needed from your child’s doctors and other health care providers?
- How often did your child’s doctors or other health care providers help you feel like a partner in his/her care?
- When your child is seen by doctors or other health care providers, how often are they sensitive to your family’s values and customs?
- How often did your child’s doctors and other health care providers listen carefully to you?
- How often were you able to get someone other than a family member to help you speak with your child’s doctors or other health care providers when an interpreter was needed?
For a child’s care to qualify as family-centered, the parent needed to answer “usually or always” to each of the above elements. (If the child did not need interpreter services, that component was excluded.) Overall, 35 percent of CSHCN received care that lacked one or more of the essential components of family-centered care.
Among the general population of CSHCN, the most commonly lacking component of family-centered care was the doctor usually or always spending enough time with the child: the parents of 21 percent of CSHCN reported that their child’s care did not meet this criterion. The parents of 17 percent of CSHCN reported that their doctor did not usually or always provide enough information, and the parents of 12 percent reported that the doctor did not usually or always make the parent feel like a partner. Among children who needed interpreter services, 44 percent did not usually or always get the services they needed.
Receipt of family-centered care varies by family income, with those in the lower income groups being more likely to receive care that is not considered family-centered. Of CSHCN with family incomes below 100 percent of the poverty level, 50 percent did not receive family-centered care, according to their parents, followed by children with family incomes between 100 and 199 percent of poverty (39 percent). Children with family incomes of 400 percent of the poverty level or higher were most likely to receive family-centered care.
Race/ethnicity is also a factor in children’s receipt of family-centered care: Hispanic children were the most likely to receive care that was lacking one or more components of family-centered care, according to their parents (53 percent), followed by the parents of non-Hispanic Black children (48 percent). Non-Hispanic White children were the most likely to receive family-centered care, based on their parents’ reports.
Receipt of family-centered care varies based on the impact of the child’s condition on his or her abilities. Among children whose daily activities are never affected by their conditions, 26 percent received care that was not family-centered, compared to 37 percent of those who are sometimes affected by their condition. Children who are usually/always affected or are affected a great deal are most likely to receive care that is not family-centered (44 percent).
Insurance type also appears to have an impact on receipt of familycentered care. Children who are uninsured are the most likely to receive care that is not family-centered (55 percent), followed by children with only public insurance (44 percent). Children with only private insurance are the most likely to receive family-centered care.