Three months after giving birth, a new mother held her baby for the very first time. Born with a congenital heart defect, her child had been rushed to the Cardiac Intensive Care Unit for surgery soon after delivery. Like most newborns in the CICU, the infant’s post-operative condition complicated everything from the first breastfeeding session to the simplest skin-to-skin intimacy. Strict safety protocols ensured that the newborn remained stable, while lines, tubes, and wires hooked him to complex machinery.
This mother’s wish, however, had been granted by the band of nurses who appeared by her bedside during their developmental care rounds at Children’s Hospital of Philadelphia. Befitting their nickname of the “warm-and-fuzzies,” which was given to them by one of the new mothers, the nurses talked less of medicine and more about motherly matters:
What would she like to tell them about her baby? Would she like to learn how to developmentally play with him or her? When was the last time she had held her child? Would she like to, now?
Questions like these can create a world of possibilities for new mothers and their critically ill infants – one that includes improved mental and physical wellness, as well as the ability to cultivate a healthy post-hospital home. These questions form the foundation of developmental care – a paradigm introduced to the CICU at CHOP over seven years ago, and a fertile research field that continues to strengthen with the work of nurse scientists.
One such scientist, Amy Jo Lisanti, PhD, RN, CCNS, CCRN-K, a clinical nurse specialist at CHOP – and one of the “warm-and-fuzzies” – is building on stories shared by parents during developmental rounds to discover how nurses can best address a new mother’s anxiety when they learn that their child has congenital heart disease (CHD). In her most recent study, published in the American Journal of Critical Care, Lisanti identified some of the strongest factors that contribute to such distress.
“There was 30 years of literature on the stress of parents in pediatric and neonatal intensive care units but nothing on the CICU,” Lisanti said. “Based on my clinical experience talking with these parents, sensing their stress, and seeing that they wanted to discuss their anxiety in developmental rounds, it was clear: We really need to come up with ways to understand what is feeding into parents’ stress so we as nurses can do something about it.”
Encouraged by her mentor, Barbara Medoff-Cooper, PhD, RN, FAAN, Ruth M. Colket Professor in Pediatric Nursing at CHOP, Lisanti used demographic data and reports from 62 mothers from three CICUs in the U.S., in order to address the gap in knowledge. These mothers’ babies had entered the CICU within one month of their birth for complex congenital heart disease surgery. Their reports provided Lisanti with the documented scientific evidence she needed to begin to drive more change in CICU nursing practice.
Why Do New Mothers Feel Stressed in the CICU?
Mothers ranked their newborn’s appearance and behavior as the highest perceived stressor when their baby has CHD, according to Lisanti’s results. The babies often appear paralyzed and unresponsive after surgery due to anesthesia or narcotics, leaving parents to worry that their infant is in pain.
“The parent meets their child in the CICU, and their baby could have a breathing tube, chest tubes, incisions, heart lines, and so on,” Lisanti said.
Coming in as the second highest perceived stressor was an experience known as parental role alteration. Lisanti defines parental role alteration as a parent’s sense that they have lost their role as “mom” or “dad” in a heartbreaking disconnection from reality. That disconnection often begins when babies must be taken to the CICU soon after birth.
“Mothers want to pick up their baby, comfort their baby, protect their baby from pain and harm, clothe them, feed them,” Lisanti said. “The CICU environment takes most of this away. As the baby undergoes cardiac surgery and subsequent recovery, it becomes very difficult for mothers to participate in normal infant-care activities. It can feel like the nurse is caring for the baby, while mom can’t do anything to protect her baby during that time.”
Furthermore, when Lisanti examined stress response in mothers, as measured by maternal state anxiety, mothers scored extremely high. She also found that parental role alteration and trait anxiety (an individual mother’s tendency to become anxious) predicted 26 percent of the variance in state anxiety scores.
Incorporating Intimacy Into CICU Care
To address maternal anxiety and parental role alteration in particular, Lisanti said nurses can begin with encouraging a new mother to hold her critically ill newborn with an established protocol.
“Developmental care is about providing all the pieces for parents to get more involved,” Dr. Medoff-Cooper said. “Getting parents to hold the babies is one of the things that Amy has been very concerned about. She developed a holding protocol so we can get parents to hold babies sooner.”
From helping mothers feed their babies to encouraging them while pumping breast milk, and other “innate natural things,” mothers can feel more active and attached. Nurses can further enhance parental role at the bedside by helping mothers read and respond to their baby’s cues.
“For moms, the concern is that they sometimes see all the cues as potentially signaling their baby is in pain,” Lisanti said. “But we can say, ‘Oh look, your baby just showed us that she needs her diaper changed. Let’s do that together.’ The more we can incorporate the parents into the care of the baby, the better.”
While there is always room for improvement, Lisanti believes that CHOP nurses already incorporate many of the interventions in their day-to-day care, contrary to practice 10 years ago.
“The culture used to be, ‘Don’t touch the baby,’ and parents couldn’t come to the bedside during medical rounds,” Lisanti said. “Even though we were family-centered, I don’t think we were as family-centered as we are now.”
Change began when Lisanti, Dr. Medoff-Cooper, and several other nurses at CHOP began to push for a paradigm shift in care that included developmental rounds in the CICU. The nurse scientists also began to discuss the subject of developmental care specific to the CICU in scientific papers. Today, they remain the only nurse researchers discussing the subject in the literature.
Helping New Moms Beyond Hospital Walls
Lisanti’s work in the CICU forms one portion of a larger five-year randomized clinical trial, led by Dr. Medoff-Cooper, that monitors new mothers and families on their return home from the delivery room. The study’s goal is to determine whether additional contact beyond hospital walls might improve both infant and parent outcomes.
Officially titled the Transitional Telehealth Home Care Study (also known as REACH), the trial is funded by the National Institute for Nursing Research and utilizes daily text messages and virtual home visits via Skype or Facebook to check in with the families on factors that include stress, weight gain, quality of life, and others. With reams of data already collected, Dr. Medoff-Cooper looks to complete the study later this year.
Like Lisanti’s study, the REACH study hinges on the idea that to support critically ill babies, we must first support their mothers’ mental and physical health.
“If we do not support families, it interferes with their parenting ability,” Dr. Medoff-Cooper said. “It interferes with their ability to hear what is being told to them, and to manage their kids in the best possible way. You have to set the stage to have a better environment for the families so that when they do go home, and the children have long-term critical illnesses such as our cardiac kids, we’re doing a better job of helping parents be better parents.”
While addressing a mother’s anxiety in the CICU may seem relatively new to scientific literature, these instincts and actions are nothing novel to Lisanti, Dr. Medoff-Cooper, and their fellow nurses. Whether it is asking a mother about her personal concerns to treating a family as a whole, it comes quite naturally to the nature of nursing – and nursing research.
“Nursing research is about finding ways to improve care through evidence, just the same as medicine,” Dr. Medoff-Cooper said. “But the way we give care is different. We’re not changing drugs. We’re changing the way we care for the kids.”
Produced by The Children’s Hospital of Philadelphia Research Institute.
© 2017 by The Children’s Hospital of Philadelphia, All Rights Reserved.