The Core of a More Complete NICU
Pregnant with her second child in 1993, Annette Held felt comfortable with the process of childbirth. She had delivered her first child without complications, so although problems could occur, Held wasn’t really worried.
Isaac’s premature birth changed all of that.
Born at 25 1/2 weeks’ gestation–and weighing only 638 grams–Isaac had bronchopulmonary dysplasia (BPD) due to immature lungs and assorted other health problems. As a result, Isaac had to be vented and admitted to the neonatal intensive care unit (NICU) at Michael Reese Medical Center in Chicago for four months. And, after that stay, Isaac required four more hospitalizations for further surgeries.
Isaac developed scar tissue and webbing around his trachea. At six months, he needed a tracheal resection. In addition to his lung problems, Isaac had retinopathy that required many visits to an ophthalmologist. He also had a hernia, which required a resection.
“This could have been a nightmare for us, but it wasn’t because of the family-centered care philosophy in the NICU,” Held recalled.
Family Centered Care
Family-centered care, a movement with roots in the 1980s, embraces the family as a necessary part of an infant’s care. Hospitals that incorporate family-centered care principles view health care as a collaboration between trained professionals and family members. Decisions affecting the patient’s future are made by everyone involved, because the family is viewed as integral to the physical and emotional development of a newborn.
Neonatology is a relatively new medical specialty. Prior to the 1970s, most hospitals didn’t have NICUs. Sick babies, premature babies and infants with congenital birth defects received as much medical support as the hospital could provide. And many of those children died as a result. Robert Newell, MD, director of the Division of Neonatology at Children’s Hospital in Greenville, S.C., remembers those years.
“In the latter part of the ’70s, neonatology started growing when special neonatal ventilators starting appearing,” he said. “With those ventilators, respiratory therapists had to be trained to operate them. At that point, special units started developing. And, quite naturally, the focus was to save the babies. Everyone was acutely aware we had a 10 percent infant mortality rate.”
During the NICU’s infancy, families were an afterthought, Newell acknowledges. The focus of care was on the patient, and health care professionals didn’t realize the effect illness had on the rest of the family–or what the exclusion of family can do to the patient.
“I had a sister who died in the 1950s from kidney disease. She was much older than I was, but I was not allowed to see her at all,” Newell said. “Children under 12 were not allowed in the hospital, and this had a huge, lasting impact upon me.”
Attitudes toward families began changing in the 1980s. As technology improved, worried families peppered health care professionals with questions–and expected answers. With the recognition of family worries, clinicians began adjusting their time to include talking with families. Newell recalled detailed explanations being a regular part of his care.
“In the ’80s, we began doing surfactant therapy. As part of initiating care, we met with families to explain what was going to happen and what they could expect,” he remembered. “A lot of the time, I was talking with not just moms and dads, but with the grandparents as well. I had to walk them through the procedure, and I began paying attention to their comfort levels. Did they hear what I was saying? Did they have other questions I could possibly answer?”
Consideration of the family’s comfort level had developed into today’s family-centered care when managed care debuted. Hospitals began competing with each other for patients, and quality customer service became paramount. Parents and families could already see evidence of NICU technological expertise, but suddenly, parental satisfaction became equally as important.
Hospital administrators, physicians, nurses and other professionals listened carefully to concerns and complaints about time spent in the NICU: critical bonding between parents and children couldn’t occur during the brief time allowed for visiting; families didn’t understand the procedures, and no one took the time to explain them; and no one was addressing the infants’ emotional and developmental needs.
Acting On Concerns
Beverley Johnson, RN, was one of the health care professionals who heard the concerns. Johnson headed the federal Maternal Child Bureau, which worked in concert with the Public Health Department in Washington, D.C. A self-described agent of change, Johnson was disappointed in the way health care facilities ignored the needs of families. Johnson viewed the NICU as an opportunity for real and lasting change.
“I worked with C. Everett Koop (a former surgeon general) to help design programs for children with special needs, and many of those children spend the first months of their lives in hospitals,” she remembered. “With a passion for hospital care, I began looking at the studies that were coming out in the ’80s about neonates and their families. The results were astounding.”
Johnson, who now serves as CEO for the Institute of Family Care in Washington D.C., says the work of Heidelinse Als, Carl Dunst and Carol Trivette first vocalized the importance of relationship-based care for critically ill infants. Technical advances benefit the patient in obvious ways, but the way care is delivered can make a significant difference, these authors showed.
“Relationship-based care takes into account the family’s input. For example, if the respiratory therapist is supposed to give a treatment at a certain time, the baby’s cues should be taken into account before that therapy is given,” Johnson explained. “To do this, questions should be asked of the family: What is going on with the baby? How is the baby doing today? Is this the best time to give therapy? What is the behavior of the baby suggesting?”
Such strategies empower families to assist in the baby’s care and rely on their intuitive sense of the baby’s needs. Caregiving becomes a partnership between the families and the health care professionals, and decisions are made in tandem–not sent down as arbitrary rules and regulations.
The Family’s NICU
Newell explained it succinctly: “It’s not our NICU; it’s the family’s NICU. We are simply given the privilege of caring for their child. In that way, we are the guests in that unit.”
When putting this philosophy to work, Newell says the first thing to eliminate is hospital rules. Families are intimidated by stringent rules, and family-centered care eliminates files while making the NICU warm and inviting.
“I can’t stand the control freaks who set up inflexible rules, especially the ones surrounding visiting hours,” he said. “Certain NICUs say parents can’t come in during change of shift, they can’t bring in more than two people at a time, and so on. Family-centered care does away with this by allowing families in there 24 hours a day, 7 days a week. Any other policies or standards are discussed with the family. Consequently, rules become participation guidelines.”
In addition to empowering families, family-centered care’s core concepts include respect, choice, information, collaboration, strengths, flexibility and support. These are more than words, Newell says. These core concepts are a statement of a facility’s values, and can be built into the NICU as easily as some of the newest technology.
“The unit should be designed with warm and inviting spaces for families. Families should be given all the information possible about the newborn, so appropriate decisions can be made,” he explained. “Physicians and other health care professionals should be trained not to concentrate on what is wrong with the patient, but to concentrate on the newborn’s strengths. Instead of saying, ‘This is wrong, and this is wrong,’ the physician might say, ‘She’s small, but she’s strong.’ Turn it around so that the cup is half full instead of half empty.”
In addition to including families in decision-making, Johnson believes families should be involved in the creation of NICUs with family-centered care core concepts. The Institute for Family Centered Care helps train health care professionals and families, and Johnson keeps a full schedule traveling to hospitals throughout the country.
“We ask each hospital we visit to send a variety of professionals to our seminars, including an administrator, nurse, respiratory therapist, physician and social worker,” Johnson said. “But we also want the hospitals to send families. Families who have been involved with the hospital know first-hand the strengths and weaknesses of the NICU. They are the health care consumers and should be part of all phases of the collaboration.”
Good Business Sense
Family-centered care’s inclusion of the consumer makes it attractive to administrators and number crunchers as well. Having a say in a family member’s care not only makes the NICU stay more pleasant, but translates into lower costs.
“Studies have shown that including the family in the care of an infant helps them feel better prepared for discharge,” Johnson says. “Those infants go home sooner because the family has been part of the care and has observed–and practiced–taking care of that child. They pick up on what is going on much more quickly. And, families who have participated make fewer ER visits and need far fewer re-admissions to the hospital.”
At Children’s Hospital in Greenville, the average length of stay for babies who weigh less than 1,500 grams has been reduced by 12 days since the implementation of family-centered care core concepts and practices. And Newell predicts more successes.
“What we are now trying to do is expand our Family Learning Center, which is sort of a step-down from the NICU. When the infant is well enough to be moved, the entire family goes into the learning center. The emphasis there is on completion of the family education process. While the family stays in this area, they provide all the care for the infant. This completes their empowerment.”
A Lasting Gift
Held considers the education she received in Michael Reese’s NICU a lasting gift that has benefited Isaac and the rest of her family. She credits her heightened ability to sense Isaac’s cues and her medical knowledge to her stay in the NICU.
“They were wonderful about educating us, which we appreciated. Right at the beginning we were asked, ‘How do you want to be involved?’ and from there, they kept us up on how he was,” she said. “They explained what was going on and what to expect, which helped us get ready for the next step. They also guided us through the environment, because we felt we had landed on Mars with all the bells and whistles. We were also nervous about touching Isaac, but we became one of the first families to be involved with Kangaroo Care. It was a very exciting time.”
Kangaroo Care involves skin-to-skin touch between parents and their babies, which is now encouraged by medical professionals. Touch is critical for a child’s physical and emotional development, and family-centered care places a high value on it.
“Holding a baby is of critical importance,” Newell says. “Parents are usually scared to death they will hurt the baby, but babies are far tougher than parents think. And, they need to be touched.”
Change Can Be Gradual
Johnson says that for hospitals seeking to incorporate a family-centered care philosophy, changes don’t need to be made in one fell swoop. Changing staff members’ attitudes can be tough, and sometimes taking small steps is more likely to ensure success.
“Begin with the design of your unit,” she recommended. “This is less threatening, and usually provokes less defensiveness on the part of the staff. You don’t need an entirely new building; the changes needed might include a new door, removal of the signage, adding more privacy areas or adding a resource center.”
Held agrees that the design of a unit makes an important first impression, but that having the newest facility isn’t always an assurance of top-notch service.
“We had both experiences. The first hospital was really the pits. We looked around, and we were nervous about the condition of the building,” she said. “But after we experienced the family-centered care philosophy, we knew we were at the right place. The other hospital was technically superb, but we were at odds with the staff the whole time. Which experience do you think we rated the highest?”
After examining a unit’s design, Johnson suggests surveying consumers to help guide the direction of changes. Do the families feel they received the information they wanted? Was the staff friendly and approachable? If not, administration can form a parent committee to liaison with
“Having parents on the committee will help staff members see what is working and what needs improvement,” she said. “If the staff considers this committee an assessment tool–and not just a place to hear complaints–the committee will be able to make tremendous strides.”
Held still remembers her time in Michael Reese’s NICU with fondness, and stays in contact with nurses and other professionals who took care of her son. The family visits every year on Isaac’s birthday and is happy to report Isaac is doing very well. But Held says the hospital is not doing as well.
“The hospital has gone through three mergers, and the NICU has fallen apart. There is no longer a neonatologist in the unit, and all of the incredible programs are gone. We’re convinced that without the care we got, Isaac wouldn’t have gotten as far as he has today. He is better off because of what happened there. Without all this collaboration with the health care team, how will other parents learn to make choices and parent their kids?”
For more information on family-centered care, visit the Web site for the Institute for Family Centered Care at www.familycenteredcare.org or call (301) 652-0281.
Katherine Lesperance is an ADVANCE assistant editor.