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Family's Value

Nurses ideally suited to deliver family-centered care in the NICU.

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Seven months ago, Kamryn Studdard was born with dangerously underdeveloped lungs due to congenital diaphragmatic hernia. Only half such babies survive. Kamryn was lucky - the NICU staff at Parkland Hospital in Dallas pulled her through.

Kamryn's parents were lucky, too, because their daughter's medical emergency came at a time when family-centered care is the norm at Parkland Hospital - and fast becoming the norm everywhere else.

"I'm a big advocate for family-centered care because that is their baby," said Traci Bernard, RN, one of Kamryn's NICU nurses. "It's very important to include the family in decision-making, in teaching, in planning the baby's care. I remember doing rounds at the bedside with the Studdard family. We asked them their opinions and involved them as much as possible."

An idea that took hold in the 1980s, family-centered care generally results in earlier discharges from hospitals, fewer re-hospitalizations, improved staff satisfaction and fewer lawsuits, according to the American Academy of Pediatrics.

As someone "who has to know everything about what he's dealing with," Shawn Studdard, Kamryn's father, couldn't be happier about this attitudinal shift among NICU providers nationwide.

"I was bound and determined," Studdard said. "My job was to get educated to learn what the numbers meant, what the tests meant. I didn't want to get in a situation where they were talking medical-speak and I didn't know what was going on."

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Earlier Discharges

The two scariest days in the lives of parents are the day their baby is admitted to the NICU and the day their baby is discharged, according to F. Sessions Cole, MD, vice chairman of pediatrics at Washington University School of Medicine in St. Louis and perhaps the country's leading advocate for family-centered care.

Cole directs newborn medicine at St. Louis Children's Hospital, home to one of the country's largest (75 beds) and busiest NICUs. Many babies at St. Louis Children's have private rooms where parents can stay overnight - sometimes for months, according to the Wall Street Journal (WSJ). Attending physicians, Cole included, work 30-day shifts with no breaks even for weekends "to provide as much continuity for families as possible," according to the WSJ.

"Family-centered care is really about getting a family ready to take a baby home," Cole told ADVANCE. "It's also about getting a family ready if a baby is not going home. It's about giving families a sense of control in an otherwise completely out-of-control situation."

Nurses, he said, are ideally suited to establish this partnership with parents. "Nurses go on daily patrol along the interface of all the issues that arise - some anticipatable, some not anticipatable - and make the family understand what's going on," Cole said.

By synchronizing a baby's medical status and possible outcome with the family's universe of beliefs and ideas and healthcare experiences, nurses help families understand "the limits of hope for their babies," he said.

Rounding With Parents

At Boston's Beth Israel Deaconess Medical Center (BIDMC), family-centered care is evolving under the direction of a mother who knows about premature birth firsthand.

"It's traumatic when you walk into that room and see a 2-pound baby connected to tubes and machines, and you're meeting 10 new people each day," said Kelly Fitzsimmons, NICU family program manager, who gave birth to a 27-week-old infant at BIDMC 7 years ago. "Family-centered care is empowering. Sharing and openness give parents the confidence to say, 'I can get through this.' Outcomes for babies are going to be much better than if parents are thrown into the world not knowing a baby's warning signs because no occupational therapist told them."

Physicians, nurses and others at BIDMC "discuss with family members a patient's status over the past 24 hours and where we go from here," said Jane Smallcomb, RN, NICU nurse manager. "Nurses teach parents to take their babies' temperatures and change their diapers. Teaching starts on the day of admission and continues throughout the hospital course to help parents become independent when they take that baby home."

All this extra work - rounding with parents, educating them about neonatal physiology, granting them round-the-clock visitation rights - pays dividends later, Cole maintained.

"My experience is that creating trust with families improves efficiency and reduces multiple phone calls," he said. "Do I have data about that? No. But I can't imagine it doesn't. It's so much easier to have family members on rounds, hearing their questions, addressing their concerns, so that 20 minutes later the social worker doesn't say something that isn't germane, or the respiratory therapist doesn't say 'We have to do this to the baby' and the family goes 'What?' In my opinion, these are efficiency-promoting interventions, not efficiency-diluting interventions."

Fears that taking family members on rounds might violate HIPAA's confidentiality rules appear groundless, Cole added. "If care providers think for 1 minute that families aren't telling each other more than the doctors and nurses will ever know about them, then the doctors and nurses are deluding themselves," he said. "To deny by hiding behind HIPAA the importance and impact of family-centered care is denial to the 10th power."

A 'Culture' of Partnerships

How prevalent is family-centered care?

It's enough of a trend that U.S. News and World Report and other magazines that offer annual "10 Best Hospital" lists (which Cole playfully chides as "beauty contests") now include questions about family-centered care in their surveys.

How family-centered care is specifically implemented, however, "depends on the pre-existing culture of partnerships within that NICU," Cole observed. "If there is no cultural norm of partnerships between doctors and nurses, between nurses and respiratory therapists, between respiratory therapists and social workers, then it's tough for that NICU to start a partnership between providers and families. Physicians might perceive nurses and families are ganging up on them."

As more and more facilities implement it, family-centered care "will be characterized by diversity rather than standardization," he predicted.

At BIDMC, family-centered care is now taking the form of a family waiting area that includes computers and a kitchenette, activities specifically geared for siblings and a mentor program that connects graduate families with families just going home.

Graduate families reconnect with BIDMC staff, too, in joyous annual reunions. "Parents are more than happy to show off their happily growing children 16 months, or 16 years, later," Fitzsimmons said.

Among those grads is Fitzsimmon's son, who is now, according to his mother, "a healthy, 7-year-old, soccer-playing, piano-playing maniac."

Michael Gibbons is an editor at ADVANCE.

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