Daily Update for Newborns Keeps Parents Informed

Parents of sick newborns need clear, immediate access to information about their baby’s condition. While conversations with the physician or nurse are a key source of information, Packard Children’s has found another way to keep moms and dads in the loop.
When the hospital's neonatal intensive care unit (NICU) switched from paper-based files to electronic medical records, it became easier for caregivers to maintain and share medical information with each other. The next step was to extend this information to vital members of the care team: parents.

A group of physicians, nurses, parents, and informatics specialists designed a template that is printed out each morning and placed by the baby’s bedside. The printout, called Your Baby’s Daily Update, provides a snapshot of key items from the electronic medical record, including the members of the care team, lab results, nutritional status and any changes over the past 24 hours. The printout has room at the bottom for the nurse or physician to leave a hand-written update or personal note.

“The team had a good sense of what needed to be included on the printouts based on what parents wanted to know about their child each day,” says Jonathan P. Palma, MD, MS, a neonatologist and member of Packard Children’s medical informatics services. “The update empowers parents with the knowledge to contribute to medical decision-making regarding their infant and creates a meaningful connection.”

When Shannon Maher's son Aiden Kuwayti was born 10 weeks early, the updates helped Maher communicate with her husband about the baby's condition. Because the Kuwaytis had an older child at home, they took shifts at Aiden's bedside, catching each other up on his condition by phone. But the stress of Aiden's fragile state made it difficult for Maher to recall specific details of his care. Instead, she gave her husband information from the printed updates each time they talked. "It really helped to have some numbers to give him," she said.

Since it was introduced in 2010, the update has been translated into Spanish and the distribution process has been expanded and streamlined. Based on the NICU's experience, other Packard Children's departments are beginning to offer similar updates for the families of their patients, too.

In a scientific study designed to evaluate Your Baby’s Daily Update, recently published in the Journal of Participatory Medicine, parents reported that they found the printout very useful, and more than 95 percent said that they “always” liked receiving it and felt more competent to manage information related to the health status of their babies. Parents rated the quality of the update as highly as information from their conversations with doctors and nurses, and more highly than many other information sources, such NICU bulletin boards or the Internet. Many considered the report to be “refrigerator worthy,” taking it home for display, as well as posting it on family blogs and Facebook.

Shannon Maher saved all of Aiden's updates in a special folder at home. She sometimes looks at them as a reminder of his first fragile weeks, which present a marked contrast to the healthy, active toddler Aiden is now.