Family-centered care approach may improve children's care

As physicians and scientists at St. Jude Children's Research Hospital work to find new insights into pediatric cancer and other catastrophic diseases, a central tenant of any treatment plan is to keep families at the center of children's care.

The philosophy of family-centered care strives to give parents and their children a voice as well as a sense of control during this arduous time. The family-centered care approach seeks answers to the direct needs of patients and their parents by seeking their input and responding in kind.

"It is about respecting the unique relationship that the family has with the health care team and validating the strengths that each family brings to the hospital when their child is ill," said Alicia Huettel, RN, St. Jude family-centered care coordinator. "In a traditional health care delivery model, the system—whether it is the physicians, nurses or other staff—has been what dictates care. Family-centered care is different in that it puts the family at the center of decision-making, empowers them and honors their preferences."

This philosophy has always existed at the heart of St. Jude, Huettel said, but now health care workers nationwide are putting a name to it and finding new ways to evolve and advance this mission.

To help nurture this approach to care, the hospital established the Family Advisory Council. Family members of patients hold two-thirds of the seats on the committee, and faculty and staff from hospital departments make up the remaining spots.

Through the council, hospital employees meet with patients and parents to discuss an array of topics that affect patient care from campus construction projects to the way the pharmacy provides medicines to patients after hospital discharge. "The process creates pathways of information and communication," Huettel said. "We're getting their input on the front end, discussing options and making decisions together."

Huettel and her team employ several tactics for sparking dialogue between families and health care workers. Parents serve as active members of various hospital committees. Focus groups are held to obtain the input and opinions of parents and patients. An informational newsletter is also published each month to address topics most pressing to St. Jude parents.

In addition to reaching out to parents and patients for feedback, Huettel and her team look for ways to strengthen the initiative by inviting evaluators to assess the program as well as by holding advanced training and seminars for hospital staff.

"The idea of putting the family at the heart of care is not new to St. Jude, but now we're putting actions to the philosophy and finding ways to move it forward," Huettel said. "There is a business case for it, because including parents in the decision-making on the front end increases satisfaction as well as improves quality and safety. But more than anything, we've embraced the family-centered care approach because it's the right thing to do."