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For 50 years, parents have been bringing their children to St. Jude Children's Research Hospital for treatment. Each of those parents has grappled with challenges regarding medications, medical procedures and boo boos that cannot be kissed away. For these families, much is out of their control.
But thanks to the hospital's philosophy of family-centered care, parents and their children are given a voice and a sense of control during this difficult time.
St. Jude understands the challenges a family faces when a child has cancer or another life-threatening disease.
Family at the center
Each child and each family is unique—with different personalities, life experiences, values, beliefs, education, and religious and cultural backgrounds. The family understands the child's needs better than anyone else does. That's why the patient and family are crucial parts of the health care team at St. Jude.
"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," said Alicia Huettel, RN, St. Jude family-centered care coordinator.
Huettel says that this philosophy has always existed at the heart of St. Jude, but now health care workers nationwide are putting a name to it and finding new ways to evolve and advance this mission.
Honoring a family's preferences
At St. Jude, the family is at the center of the decision-making process. The care provided is flexible so that the family's needs and choices are met. Families have the power to express their preferences, and they have the assurance that hospital staff will honor those preferences.
This process provides many medical benefits for the child. It also helps families retain a sense of balance and control.
St. Jude encourages families to offer input on programs and processes that may benefit other current and future patients. For instance, families serving on the hospital's Family Advisory Council help make many important decisions at St. Jude, such as designing family-friendly buildings to streamlining patient-care processes.
Listening to families' suggestions
Patients and families also offer valuable suggestions through focus groups. The hospital publishes a monthly parents' newsletter to keep families informed about changes and to encourage their input.
"The response of the nurses, doctors and other staff that we've met with has been amazing," said one St. Jude mom. "They are thirsty for our opinion—even when it is something as small as ‘Add memo pads in the rooms for parents to write down their questions while they are waiting for the doctors.' By sharing these real-life experiences that parents have each day, we help make everyone's time at St. Jude a little better."