A bit premature: Helping parents of preemies

by Jessica McCann

Numbers tell part of the story. About 12 percent of all pregnancies in the United States result in premature birth. That's more than 480,000 "preemies" each year, according to statistics from the National Institutes of Health.

Born three or more weeks before their prime, these babies are much smaller than their full-term peers. Their heads seem oversized for their tiny frames. Their eyes remain closed for several days. Their skin is thin, reddish. Preemies, as one parent put it, look like little birds that have fallen from their nest.

"During pregnancy, most people have visions of having a typical Gerber® baby," says Bernadette Melnyk. "Then, suddenly, they're in a high-risk situation, where they give birth to a preemie infant who has a lot of different behavioral and physical characteristics than that baby they envisioned. Most parents aren't prepared for that."

Melnyk is dean and distinguished foundation professor in nursing at Arizona State University's College of Nursing & Healthcare Innovation. She says that the parents of preemies often lack adequate knowledge of how to parent and interact with their infants during the hospital stay.

"They want to hold their baby and have it look in their eyes," she explains. "They want that baby to respond when they talk or sing to it. But preemies just aren't responsive to people in their environment, because their neurological system is so immature."

Preemies don't just look and act differently. They have special needs. Their organs and nervous systems are not fully developed. The infants must spend weeks or even months in the hospital neonatal intensive care unit (NICU) catching up on the growth and development they missed in the womb. Through it all, frightened, stressed-out parents often look on, unsure of their role in the NICU or their ability to care for their tiny baby.

Parents tend to overstimulate their premature infant, in hope of getting some response. Unfortunately, Melnyk says this leads the preemie to essentially tune the parent out. The baby shuts off the "noise" that its underdeveloped nervous system is unable to process. This can leave mom and dad feeling incompetent as parents.

To help ease parents' stress and improve interactions between parent and baby, Melnyk developed COPE (Creating Opportunities for Parent Empowerment). COPE is an educational-behavioral intervention program for parents of preemies.

Melnyk began her work with parents of premature infants in Rochester, New York, almost a decade ago while a professor at the University of Rochester School of Nursing (URSON). As part of a pilot study, Melnyk and her research team tested the effects of the early intervention education program with 42 mothers of preemies. The initial findings were encouraging.

Based on that success, they began a full-scale randomized controlled trial with 260 families from 2001 to 2006. That work was funded by the National Institutes of Health/National Institute of Nursing Research.

Study results show that COPE not only helps reduce parental stress, it also reduces the infants' length of hospital stay in the NICU. Early intervention appears to be the key. Other education programs for parents of preemies commence just prior to discharge from the NICU. COPE is different. The program begins within two to four days after birth, a period of high stress for parents.

"Each baby is unique and each birth is unique, but having a preterm baby has its own unique issues that parents have to cope with," says Nancy Feinstein, an assistant professor at URSON and co-investigator for the study.

The COPE program provides information in different media. During the NICU stay, parents get printed materials and audio tapes in four phases. They use color photographs and simple language. The goal is to teach parents the normal behaviors and characteristics of a preemie. The information is designed to reassure them that their preemie will most likely catch up developmentally to other babies by two years of age.

The program also includes a workbook. Various activities help parents to understand and appreciate their baby's special qualities. One activity to complete is a milestone chart. For example, parents note the first time they held their baby and the first time the baby opened its eyes.

"Those are important milestones for the parents of preemies," Feinstein says.

As part of the pilot study, only half of the participants received COPE intervention materials. The other half received basic hospital admission and discharge materials in the same format.

Parents who received COPE reported significantly less stress in the NICU. They had less depression and anxiety than parents who received the control intervention. Staff members observed that they were more positive in interactions with their infants. COPE parents also reported stronger beliefs about their parental role. They had a better idea of what behaviors and characteristics to expect of their infants during hospitalization.

At two months following hospitalization, COPE parents continued to report significantly less depression and anxiety than other parents of preemies. Follow-up with the study group continued through three years. The researchers are evaluating that data to determine if the positive results continued over time.

The study found another benefit of early intervention. The length of time infants spent in the hospital actually decreased by four to eight days. Melnyk says this speaks volumes about the effectiveness of COPE. NICU discharge criteria require that the baby is physiologically stable. But they also require that parents are deemed ready to assume care for their baby on their own.

"We were pleasantly surprised by the extent of the difference in the length of stay in the babies whose parents got COPE," Melnyk adds. "There was a very strong correlation between parents' belief and confidence about their ability to care for that baby and the baby's length of stay."

This unexpected benefit could add up to dramatic cost savings. The average cost of a one-day stay in the NICU is roughly $1,250. A four-day reduction, multiplied by the number of preemies born each year, would result in a $2.4 billion annual cost savings for the national healthcare system.

Now that COPE has been proven effective, the next step is to put the research into practice. The study results were published in November 2006 in the journal Pediatrics. Since then, Melnyk's team has received dozens of inquiries from hospitals. She already has worked with staff at Phoenix Children's Hospital to study the effectiveness of different implementation approaches.

Melnyk and her colleagues believe that by making COPE the standard of care in the NICU, parents of preemies will be bolstered with the information and confidence they need. They will help their little babies leave the hospital sooner and soar higher.

Melnyk is currently studying the potential effectiveness of a program similar to the COPE framework for mothers of critically ill children. For more information, contact Bernadette Melnyk, Ph.D., R.N., College of Nursing & Healthcare Innovation, 602.496.2200. Send email to Bernadette.Melnyk@asu.edu