Newswise — 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.”
St. Jude Children’s Research HospitalSt. Jude Children’s Research Hospital is internationally recognized for its pioneering research and treatment of children with cancer and other catastrophic diseases. Ranked the No. 1 pediatric cancer hospital by Parents magazine and the No. 1 children’s cancer hospital by U.S. News & World Report, St. Jude is the first and only National Cancer Institute-designated Comprehensive Cancer Center devoted solely to children. St. Jude has treated children from all 50 states and from around the world, serving as a trusted resource for physicians and researchers. St. Jude has developed research protocols that helped push overall survival rates for childhood cancer from less than 20 percent when the hospital opened to almost 80 percent today. St. Jude is the national coordinating center for the Pediatric Brain Tumor Consortium and the Childhood Cancer Survivor Study. In addition to pediatric cancer research, St. Jude is also a leader in sickle cell disease research and is a globally prominent research center for influenza.
Founded in 1962 by the late entertainer Danny Thomas, St. Jude freely shares its discoveries with scientific and medical communities around the world, publishing more research articles than any other pediatric cancer research center in the United States. St. Jude treats more than 5,700 patients each year and is the only pediatric cancer research center where families never pay for treatment not covered by insurance. St. Jude is financially supported by thousands of individual donors, organizations and corporations without which the hospital’s work would not be possible. In 2010, St. Jude was ranked the most trusted charity in the nation in a public survey conducted by Harris Interactive, a highly respected international polling and research firm. For more information, go to www.stjude.org.
Expert available: Alicia Huettel, RN, is a family-centered care coordinator at St. Jude. Huettel works with families and hospital staff to enhance communication as well as develop avenues that empower parents and patients in the hospital setting. Huettel can address topics such as strengthening the role and voice of parents; developing programs and committees that encourage and support family-center care; and promoting communication among hospital staff, families and patients during treatment.
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