Deep Dive: Family-Centered Care in Pediatrics

The word swirls in her mother’s head like a storm: “Leukemia.” The walls in the hospital's room are colorful, filled with bright murals that lift her spirits, but the potential diagnosis still weighs heavily on her. She hopes it’s not true, that the doctor’s suspicions are wrong and that they’re dealing with something simpler, but when the doctor returns, his solemn face says it all—her daughter, Jamie, has cancer. Nothing in their world will ever be the same.

The road to recovery is a long one. Regular visits and chemotherapy involve the support of the entire family. Jamie’s three sisters follow along every visit, cheering her on and providing normalcy in a difficult situation. Her mother works around an impossible schedule, but she makes it to every appointment and follows every directive. Jamie’s mother and sisters have come to rely on their pediatric nurse, Casey, someone they know will be by Jamie’s side, helping her heal through challenging days. Casey is there for everything, laughing in those joyful moments, crying when it so often hurts, and teaching her family how to care for Jamie at home while between visits. Though the journey is hard, the doctor eventually returns after her final tests and says, "Her cancer is in remission. We've beat this."

Follow-up visits ensure Jamie’s cancer doesn’t return, but before any test, Jamie spends time close to Casey. They talk about how well school is going and how her grades are the best in her class. She shares her favorite videos from social media. They laugh at a picture of her dog, Luna, hanging upside down on her couch, tongue hanging out the side of her mouth. Jamie brings Casey a plant as a gift, and Casey promises to keep it alive, though she's never had much of a green thumb. Jamie’s said it a million times, but she whispers it again, a soft “Thank you,” and this ritual repeats with each visit.

One day many years later, Jamie comes through the Pediatrics door with two small children of her own, born long after their mother’s bout with cancer. They’re healthy, vibrant, and Casey knows that, without the hard work of Jamie’s family, her doctors, and talented nurses, none of it could be possible. Just as she did when she was a little girl, Jamie wraps her arms around Casey and whispers, “Thank you,” and her children latch to each of Casey’s legs, seeming to know her in ways they can’t yet describe.

Pediatrics is family-centered care, treating parents, grandparents, siblings, and children like Jamie daily. In this unique hospital environment, nurses become a part of the family, and families, in turn, become a part of UMC’s skilled team of caregivers. Pediatric nurses learn early on that their scope of care includes more than a sick child. Parents and siblings must be taught about medical treatments and equipment, sometimes across language barriers. When situations become emotionally difficult, nurses turn their attention to family members and serve as pillars of support. Pediatric nurses need to be intuitive and watch for social and familial problems that might be under the surface to ensure the best care for their young patients.

Nancy Leal, Director of Pediatrics and the Pediatric Intensive Care Unit (PICU), said, “In one day, a nurse might take care of a three-week-old baby and an eighteen-year-old athlete." She highlighted the principles of being a pediatric nurse, including the importance of open and objective information sharing between families and providers, sensitivity to cultural and spiritual dimensions, including families in decisions, and the incorporation of families across all parts of their child’s care. “Every patient is our patient,” she said, describing how teamwork is vital in the pediatric environment and how the values of teamwork are important to UMC as a whole.

Pediatric nurses are cross-trained on the Pediatrics Floor and the PICU regardless of their final assignment. Nancy believes it's important for nurses in Pediatrics to understand how different points of care affect the overall outcome of patient recovery. Both sections share important resources, including social services, pharmacists, dieticians, and child-life professionals. The cross-training and broad awareness of pediatric services result in holistic care for children and their families. However, it takes more than cross-training to build a cohesive team. Nancy and the pediatric nurses have taken time outside the high-stress PICU and Pediatric environment to cut loose and help nurses get to know one another.

“We recently went to 4ORE! Golf as a group and hit balls and shared chips and salsa together,” Nancy said with a smile. “I can get to know you so much better when we’re not responding to a crisis.” Teamwork and mutual understanding are critically important in high-stakes environments like pediatrics, where children being cared for in the unit can deteriorate quickly and where on-hand nurses are responsible for split-second decisions that may be lifesaving. The more the nurses work together, share information, and put their heads together, the better the overall patient outcomes.

Stories like Jamie’s show that pediatric care often results in life-long connections between nurses, patients, and their family members. Nurses know that not every ending is a happy one, but they can rest assured that children receive the best care possible in an environment fostered by teamwork, commitment, and passion. “I know it’s hard for some families to let you in… to relinquish that emotion and those feelings and allow a total stranger to move through this intimate period with you.” Our pediatric nurses fill those roles every day, building trust and reaching goals that, at first encounter, seem impossibly far away. But on the best days and with the best outcomes, those young children grow, maybe have children of their own, and never once forget the name of the nurse that helped them build a beautiful life forward.

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