Date of Award

8-9-2014

Document Type

Open Access Dissertation

Department

Health Services and Policy Management

First Advisor

Janice C. Probst

Abstract

Family-Centered Care (FCC) is considered the standard of care in pediatrics, being affirmed in 2003 by the American Academy of Pediatrics (AAP). Family centered practices center around five specific provider actions: (1) did the provider spend enough time; (2) did the provider listen carefully; (3) was the provider sensitive to the needs of the family, including their values and customs; (4) did the provider provide information as needed; (5) did the provider make the caregiver feel like a partner in the care of the child. In addition to FCC practices, shared decision making (SDM) has been indicated as important in disease management and is one of the maternal and child health bureaus core outcome measures for children with special health care needs.

Asthma is the most prevalent chronic health condition in children. This is a significant public health burden not only on the children’s care givers, but also on schools, employers and the health care system. In many cases asthma cannot be prevented, but improvement of outcomes is an achievable goal. While over the past 2 decades we have seen a substantial increase in therapies available for treating asthma, the prevalence of asthma and the health care use associated with the disease, have not decreased substantially. This suggests we need to look at alternate strategies to manage the disease including those that enable the patient and their families to manage it more effectively. These alternate strategies include family-centered care.

Our study first examined the measures of family-centered care and measures of shared decision making, found in the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) to determine if they are separate constructs. Our study found that measures of FCC and SDM are the same construct and should potentially be included together into a more comprehensive measure of FCC.

Our second study then examined specific outcomes relative to the receipt of FCC and the experience of shared decision making in children with asthma. We found that children with asthma who received care that was perceived as FCC or experienced SDM were significantly more likely to receive all of their needed prescription medications and not to have visited the emergency department in the past 12 months.

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