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Feature

Small Patients, Big Discoveries

Pediatric nurses spark healthy futures. Faculty and researchers revolutionize pediatric care at the intersection of science and practice.

“Pediatrics is often thought of as cute people doing cute things for cute children,” says Kerry Shields, MSN, MBE, CRNP, GNu’03, Gr’03. “It’s so much more than that. Our work is highly complex.” Shields would know. As a lecturer in the department of family and community health at Penn Nursing, she’s got a front row to the panoply of pediatrics innovations coming out of the school. She says, “Childhood illness is often lifelong illness. We’re not just treating what’s in front of you, but changing the trajectory of someone’s entire life, as well as the lives of their siblings, parents, and community.”

Penn’s faculty are leading the field of pediatric nursing science and research. Their work ranges from large scale international studies to creating data models that are poised to advance the discipline and question accepted practices. Their queries are uniquely poised through the lens of nurses, meaning, with an eye toward empathy and equality. “We partner with parents, we stand beside them at the bedside, we stay with patients around the clock and address their physical and emotional needs,” says Martha A.Q. Curley, PhD, RN, FAAN, Ruth M. Colket Endowed Chair in Pediatric Nursing. “Nursing is a discipline that requires its own science to support it.”

Advancements aren’t only coming from research. Faculty and nurse scientists are also thinking about how to better prepare students for clinical practice. “We’ve adjusted and structured the curriculum to focus on the lifespan of a patient’s health,” says assistant professor Amanda Bettencourt, PhD, APRN, CCRN-K, ACCNS-P, Gr’19. “It’s key to clear out a path where students see themselves as really making a difference in the lives of children and families.”

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Nurses Help Nursing

“Burnout” is an omnipresent word in nursing today. Several researchers, clinicians, and faculty at Penn Nursing are tackling it head-on, hoping to help reverse attrition trends and improve the quality of work life, especially in pediatrics. One stress point that research assistant professor Halley Ruppel, PhD, RN, Nu’08 noticed was the increase in monitoring and digital communications. They produce buzzing, beeping, and constant disruption. “Patients in the pediatric intensive care unit have long been continuously monitored,” says Ruppel, “but we’re seeing more of it in other places because the technology exists, and it’s getting cheaper.” That lead her to question if that’s helpful or harmful. “New technology is often lauded as something that’s going to increase efficiency and reduce cognitive workload,” says Ruppel. “But it’s just not always the case.”

“Clinicians are experiencing so much information coming at them at all times—they have to determine what to prioritize.”

Research published by Ruppel and other colleagues had identified that alerts go off too frequently, create constant noise, and often don’t represent real issues. (If you know the fable “The Boy Who Cried Wolf” you know how this one ends—alarms get ignored.) There’s reason to believe the constant beeping and buzzing can contribute to burnout, says Ruppel. What’s more: In many hospitals today, nurses get all the alarms from medical devices on mobile phones. There’s also an increase in text and direct messaging between nurses, doctors, and staffers.

“Clinicians are experiencing so much information coming at them at all times—they have to determine what to prioritize,” says Ruppel. “Sometimes they are actually in patient rooms doing sterile procedures or under personal protective equipment and have to decide, you know, should I look at the phone?” Her work examines ways that new technologies are introduced into nursing. She says, “Ultimately, we want to improve patient safety and outcomes and the well-being of nurses and their job satisfaction.” A grant funded by the Agency for Healthcare Research and Quality is giving Ruppel the opportunity to develop interventions for pediatrics and beyond. She says, “It includes a lot of design thinking, rapid prototyping, and engagement with stakeholders to ensure we’re finding feasible and meaningful solutions.” Her co-investigator is Marion Leary, RN, MPH, PhD, GNu’13, Gr’14, Gr’23, Penn Nursing’s director of innovation.

Bettencourt, a clinical nurse specialist, has a particular interest in implementation science. She figures out ways to help nurses adapt to necessary changes in the hospital, something that can be overwhelming to many. She does that by partnering with local pediatric clinicians for different research studies. One example: There’s a specific type of IV catheter that is better for children with infections. Clinicians often don’t want to use it, so she partnered with a team in the pediatric intensive care unit (PICU) to design strategies to make it easier for the staff to use the catheter. “It’s better for the kid and better for the hospital,” she says. “It’s critical that the strategies fit into their natural workflow. In today’s environment, where people are leaving the bedside, we don’t want to make life harder.”

She’s taken those strategies to help create effective telemedicine treatment plans for pediatric burn victims. “There are very few pediatric burn centers in this country,” says Bettencourt. Meaning, children who suffer burns aren’t necessarily being cared for by clinicians who are experts in this field. “Telemedicine and telemonitoring are sort of the answer,” says Bettencourt. With a grant from the Department of Defense—who could use her study and recommendations to provide care to members of the military—her team is in the process of designing a tool kit that can be implemented by anyone on-site or via telemedicine. (Or maybe even parents, one day, in the same way they learn CPR.)

Bettencourt also teaches the required clinical pediatric undergraduate class at Penn Nursing. She sees it as an opportunity to shift the way freshman nurses approach their futures, and she has adjusted the curriculum to address issues she sees in the hospital setting. (Bettencourt recently finished a tenure as the president of the Critical Care Nursing Association, which took her around the country to many speaking engagements. “I heard it over and over—that we have to get nursing back to basics,” she says.) The course has traditionally focused on acute care, but she’s shifted it to be as much about promoting the complete health of families, children, and society and the way those factors work together. She’s challenging students to be “curious, thinking nurses”—critical skills for younger generations to master. In class, her students debate hot-button topics like vaccine choice and firearms access; roleplay how to talk to families whose beliefs are different from theirs; work on listening and being present; and engage in addressing mental distress and how to implement the latest care breakthroughs throughout their career. “I have the students use ChatGPT like a family would—arming themselves with facts and information,” says Bettencourt. “We challenge them to understand what they bring to the table. It’s the caring. The listening. The advocacy. The holistic care.”

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Nutrition in Critically Ill Children

When Sharon Irving, PhD, CRNP, FCCM, FAAN, FASPEN, GNu’93, Gr’11 was a pediatric bedside nurse, it never made sense to her that critically ill children would get intravenous (IV) fluids for days on end. “A child’s whole job, if you will, is to grow,” says Irving. “And they can’t grow on IV fluids.” That observation launched a deep curiosity into the intersection of sick children and nutrition that has guided her career. Irving—an Associate Professor of Pediatric Nursing and the Vice Chair of the Department of Family and Community Health at Penn Nursing—has studied the “what and how” of nutrition in a variety of ways, like how to monitor and best provide nutrition to obese children in the ICU (she knows there’s a lot of attention about malnourished children, but not on kids on the other end of the spectrum). Currently, she’s leading a chart-based inquiry into how and when feeding is started for critically ill infants in the PICU and how the timing impacts outcomes. “When they’re critically ill,” says Irving, “they can’t take food by mouth. Are the other modalities we use to feed appropriate? Is our determination of how much they need appropriate and accurate? It keeps snowballing for me.” She’s published several papers looking at nasal gastric (NG) feeding tubes and how to determine if they are safely and correctly placed. “Nurses are taught to use auscultation to determine if the NG is in the right place. But the reality is, it could still be wrong, even if you ‘hear’ it over the stomach, putting the patient at risk for harm.” She’s determined the efficacy of new ways to verify the tubes are in the right place, including monitoring gastric pH levels and using X-rays in a way that minimizes radiation. Her published work is filled with best practices. “When a child is in the hospital, there are competing clinical priorities. It’s seldom that the first thing people pay attention to is nutrition,” says Irving. “But you’ve got to use the gut when somebody is ill. The importance of it cannot be understated.”

Questioning The Status Quo

“That’s how it’s always been done” is not a phrase that Penn Nursing faculty and staff accept. Curley, for example, has taken a fresh look at how seriously ill children are sedated. “How do you keep them comfortable enough so they can participate in their own care? Tolerate therapies, recover faster, without harm?” she says. Now, with a new study involving 60 U.S. and international sites, she’s testing two interventions for children with acute respiratory failure—to see if shifting standard practices would improve outcomes. One aspect is positional (does prone or supine yield better results), and the other is about the use of different types of ventilators. “Children come to the ICU with infections and injuries, all things that impact their capacity to breathe,” Curley says. While the study is slated for seven years (COVID-19 slowed it down), it has an adaptive randomized design, meaning “statisticians can move patients into better performing study arms and away from poorly performing arms, so kids get advantages of the best treatment sooner,” explains Curley.

“You’re not just working with the child. You’re working with their entire family and the larger community. Sometimes we serve as their only health care provider.”

Her work also extends beyond the hospital doors. She recently finished enrollment on a cohort study looking at pediatric post-intensive care syndrome. She’s not just assuming that a patient is okay once they leave the ICU. “Pediatric critical care has done well in helping children survive,” she says, “but we’re investigating the quality of survival. Are they emotionally traumatized? Are they able to sleep? Do they have the resources they need to heal?” Curley’s goal is to understand a patient’s long-term needs so nurses and doctors can target interventions in or after the ICU. She wants to “launch them into the world as best we can.” The bi-coastal study—there’s a team at Seattle Children’s hospital—will follow 750 kids for two years. She says, “We’re also measuring the possibility for resilience because when you go through something traumatic, sometimes you end up being in a better place afterwards.”

For Ruppel, it was a changing societal narrative that inspired her to dig deeper. Studies in adults indicate that pulse oximeters may be less accurate in patients with darker skin, and she sought to explore this phenomenon in pediatrics. She used retrospective data to inform a prospective study that turned into a five-year grant from the National Institutes of Health/National Heart, Lung, and Blood Institute to better understand how the accuracy of pulse oximeters differs in children who have different skin colors. The outcome could have critical implications since many practitioners use the pulse oximeter readings to inform care decisions. “When we think about what pulse oximeters do and what they’re approved to do—it’s really an estimate,” says Ruppel. “And yet, in practice, we’ve sort of come to rely on them. We’re seeing how that could potentially be detrimental.”

Data And Decision Making

Everyone is talking about data these days, especially in medicine. But there are two prevailing questions surrounding it for nurses and doctors—how it is collected and how it is used. While big hospital systems and well-funded grants know how to read data, it’s equally important to independent clinicians navigating community health. Just ask Holly Rishel, MSN, RN, Nu’94, who has been a certified school nurse at the Central York School District in Pennsylvania for eleven years. “You’re not just working with the child,” says Rishel. “You’re working with their entire family and the larger community. Sometimes we serve as their only health care provider.” That means that Rishel and her team need to be proactive with changes and trends they see. They do that by documenting, tagging, analyzing, and sharing the data they meticulously collect—and are grateful for the technology and systems the district provides. “Obviously, we’re looking to change processes and provide a safe school environment, but we also need to coordinate care and to remove barriers for kids and their families.”

Rishel and her colleagues find little things that have a big impact. In using detailed data collected from recess injury reports across four grade levels, she was able to quickly develop and track new playground safety guidelines and even identify when equipment needs to be replaced or rethought. (In one scenario, shifting classrooms around led to kindergarteners unintentionally using playground equipment that was too high for them.) Data sharing and coordination is increasingly important and a part of Rishel’s job. A rise in children with complex health concerns— including mental illness, behavioral challenges, chronic diseases, and severe food allergies—means documenting and disseminating data to a variety of teachers, food service employees, and coaches is paramount to a child’s wellbeing and success at school. Rishel has worked across departments to create systems and intake forms that serve as templates for care.

Of course, how data is being collected and used is equally important. Kenrick Cato, PhD, RN, CPHIMS, FAAN is a clinical informatician whose entire discipline is data. “I work in decision support—trying to give clinicians, patients, or caregivers information to help make better decisions.” One current project: He and a team are trying to understand how data and artificial intelligence (AI) can help caregivers of children with asthma in southwest Philly execute the right treatment plans. Funded by Penn4C (a collaboration between the nursing and engineering schools at Penn), he’s identifying what barriers they face when it comes to medication guidance and building out prototypes to make getting the right information at the right time easy, in hopes of seeing this population of kids have better management of their condition.

“We want these prediction models to work fairly. Some in the data science community believe that if you have enough data, you don’t have to worry about biases.”

Cato is also helping to take work he’s done on mining electronic health records (EHRs) for adults and applying it to pediatrics. EHRs were mostly set up for billing and coding, but he sees a wealth of untapped data in them. He hopes with that data he can help pediatric departments phenotype and model predictive outcomes, which could help them with decision- making, staffing, and more.

Additionally, he approaches all his projects with a mind toward bias—things like age, gender, race, language, and ethnicity. “We want these prediction models to work fairly,” he says. “Some in the data science community believe that if you have enough data, you don’t have to worry about biases.” His research has proved that’s not true: He’s published studies highlighting those biases so that others in his field know they exist. In one such published study “we showed that we could predict a person’s race just by the words used in their notes,” he says. “It’s important that people acknowledge and adjust for that.”

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Changing Cultural and Political Landscape

The innovations made in prenatal diagnosis and treatment for fetal anomalies have been astounding. It’s something that caught the attention of assistant professor Abigail Wilpers, PhD, WHNP-BC over a decade ago when she was charged with coordinating a study following individuals whose pregnancies were complicated by severe fetal congenital heart disease. “My first job out of college was working with these families at the hardest moments of their lives,” she says. “I really got a sense of how groundbreaking this medicine, science, and technology could be.”

“How do you help guide an expectant parent to understand complex information and make decisions in this kind of emotional state? How does mental health play a role in the outcomes? Are there certain regions of the country that aren’t even presenting the option for maternal fetal surgery, or certain groups of people who are less likely to be informed of all their choices?”

That inspired Wilpers to really examine critical aspects of high-risk maternal-fetal care. What she realized is that decisions and outcomes for this patient population are impacted by changing cultural beliefs and reproductive health laws. Take, for example, the straightforward act of communicating with patients who are presented with the option of maternal fetal surgery after the diagnosis of a fetal condition like spina bifada. “These families have gotten shocking, unexpected news,” says Wilpers. Perhaps they are bounced around to different specialists and must make quick decisions about their health and their expected baby’s health, all while the clock is ticking on the options, especially following the overturning of Roe v Wade. How do you help guide an expectant parent to understand complex information and make decisions in this kind of emotional state? How does mental health play a role in the outcomes? Are there certain regions of the country that aren’t even presenting the option for maternal fetal surgery, or certain groups of people who are less likely to be informed of all their choices? Wilpers has recently published two articles on the health care news site statnews.com about the changes in reproductive laws and their real-world impacts on this highrisk patient population.

In her research, she also examines the impact of being respectful of people’s preferences, needs, and values, acknowledging that social determents of health are often at play. “Mental health is a big piece of this because not everyone winds up with a live baby. And those who do can struggle to care for themselves and a child with special health care needs,” she says. Her research—in which she’s working with a dozen fetal care centers around the country— aims to determine if person-centered care makes a difference in maternal mental health outcomes. Her work is bringing together experts in fetal diagnosis and treatment, perinatal palliative care, and maternal mental health and led to her team developing the first person-centered care designed for this patient population. Moving outside of the hospital setting is critical, too. Her research as focused on data and patients in fetal care centers. But, she says, “some people don’t even make it to the doors.” She’s partnered with SisterSong Women of Color Reproductive Justice Collective to identify the unique experiences and needs of individuals who have been largely missing from the evidence in this evolving high-risk care.

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