Significantly preterm infants often require specialized care available only in a neonatal intensive care unit (NICU), with the length of hospitalization dependent upon how early the infant was delivered and the severity of any associated medical complications or conditions.
It is not uncommon for preterm infants to remain in the NICU for several months, and those who begin their lives in this environment may experience altered sensory experiences as well as a disruption in the parent-child interaction. Such early experiences can affect an infant’s attachment and increase the risk of developmental, behavioral and emotional challenges – particularly for babies who remain in the NICU for any significant period of time.
Washington University researcher Bobbi Pineda, PhD, OTR/L, is examining some of these unique challenges facing preterm infants and their families. Focused both on identifying factors that support or impede early childhood development and optimizing outcomes for preterm infants and their families, she implements interventions that begin long before infants and their families are discharged from the NICU. As head of the Occupational Therapy NICU Laboratory, a multidisciplinary group that is part of the Washington University neurodevelopmental research team, Pineda and her colleagues work together to better understand how factors such as the environment, medical conditions, and interventions on brain structure affect infants’ long-term outcomes.
Pineda was recently awarded a three-year grant from the Gordon and Betty Moore Foundation to build evidence on family engagement in the NICU to improve outcomes. The project will involve parent engagement in care by having them provide developmentally-appropriate sensory exposures to their infants. Pineda hopes to show that providing concrete guidance to parents on how to engage and provide sensory based interventions for their infants will result in improved motor, cognitive, language and sensory outcomes for the infants, as well as improved parent-child engagement, responsive parenting, early attachment and better mental health outcomes for the parents.
Pineda and her team will be working with 72 families with infants born at least two months early at St. Louis Children’s Hospital and anticipate the infants will be hospitalized for at least one month. For this study, they searched and organized research related to sensory interventions (tactile, auditory, visual, kinesthetic, vestibular, olfactory and gustatory) in the NICU and will bring all the evidence together into a clinical practice guideline that will inform what age-appropriate sensory exposures are necessary for preterm infants across the time of hospitalization. “These types of supported exposures include the use of Kangaroo care (skin-to-skin contact), singing or reading, and low ambient light. We will educate and provide support for parents to engage in activities they can do throughout the day with their baby that will be supportive of their development. We are hopeful that the interaction will be good not only for the infant’s development, but also that it will set a foundation of engagement and interaction that can carry through to the home and promote better outcomes in terms of parent-child relationships,” Pineda says.
Collaborating with Pineda on this effort is Joan Smith, PhD, RN, NNP-BC, associate professor and advanced practice clinical scientist at Goldfarb School of Nursing at Barnes-Jewish College. Smith, a certified neonatal nurse practitioner focused on family-centered care, serves as the nursing principal investigator (PI) sub-award grantee and believes this marriage of nursing and OT in the NICU is vital to improving outcomes for families.
“The importance of a collaboration between nursing and occupational therapy is that it provides newborns and their families with a comprehensive, holistic, and preventative approach to care both during and following their NICU stay,” Smith says. “Infants born very preterm are at high risk for long-term morbidity that is not fully explained by their clinical course and disease. The influence of the NICU environment (which is quite complex) on long-term neurodevelopment is in its early investigative stage, and our ability to collaborate across disciplines and examine appropriate sensory exposures for very preterm infants allows us to bring complementary perspectives, knowledge, experience and skills that can result in innovative approaches to care.”
Pineda has also assembled a parent advisory board comprised of a multidisciplinary group of health-care professionals dedicated to patient engagement and providing optimal health care. The board will offer guidance on how to best engage parents at each stage of the project. Pineda and her team believe this research can have an immediate and powerful impact on infants who are enrolled in the study, but they also share a positive view of what the NICU experience could be like 10 or 20 years from now, as the results of this research could change neonatal care.
Personal experience shapes professional path
Pineda was drawn to this work by factors that were both professional and personal. Early in her career, Pineda worked as a clinical occupational therapist in many different pediatric settings. Providing OT services in a hospital setting appealed to her because she was interested in defining and implementing interventions that could change a person’s health trajectory starting immediately after an injury or illness. The NICU quickly became one of her favorite places to work. “Interventions at the beginning of life, in the NICU, intrigued me; it was amazing that such a large impact could be made for such a small infant,” Pineda says.
Pineda’s interest in mothers and their infants in the NICU intensified following the preterm birth of her first child. Pineda experienced the desire to parent her own newborn while also feeling a lack of control, a common psychological challenge experienced by parents in the NICU. She vividly recalls her initial reaction to seeing her son in the NICU’s isolette under the bilirubin lights used to treat patients with jaundice. “All I wanted to do was hold him, but the nurse would not permit it,” Pineda recalls. “As a parent, it was devastating to hear that I could not hold my baby.” A nurse practitioner witnessed Pineda’s reaction to being unable to hold her child, reassessed the situation, and enabled her to hold her preterm infant. “The act of holding him was therapeutic for both of us. His heart rate lowered, and he relaxed against me. It improved my emotional health and gave me the ability to participate in the parental role,” she adds.
The technology-laden atmosphere of the NICU environment, along with stressors related to preterm birth, can affect the health and well-being of both the infant and the family, making it difficult for parents to take on parenting roles. Different approaches to family-centered care in each NICU can impact how and when parents can engage with their infants, and many parents feel overwhelmed by uncertainty when interacting with their preterm babies within the medical environment. “Parents can fill an important and powerful role within the NICU environment, if only given the tools and support to do so. What can result are positive effects for both the parents and the infant,” Pineda says.
Families may need guidance and support to engage appropriately with their infant in the NICU. Infants are sometimes exposed to painful experiences, but parents can be taught how to comfort them and minimize their pain. Parents can also provide positive sensory exposures, such as holding their infant skin-to-skin, talking to them, playing soft music, and massaging or rocking them. These sensory experiences may mimic some of the exposures they would have received if born at full term, and they are important for establishing positive foundations of memory, learning and sensory processing. While OTs in the NICU may be responsible for providing age-appropriate sensory exposures to promote better outcome, they also have a very important role in guiding parents to provide these positive experiences to their infant. “The amount of brain development that occurs in the NICU for the preterm infant is significant; it provides a window of opportunity for therapeutic interventions that can lower the risk of developmental problems. One constant force in the life of an infant is the presence of parent; OTs can make the largest impact on the infant by instructing and empowering parents to conduct therapeutic interventions with their infants,” Pineda shares.
Engaging students to make a difference
Pineda’s work also offers OT students the opportunity to participate in the NICU lab’s team-based activities, learn core knowledge related to being a neonatal therapist and engage in many aspects of clinical research in the NICU.
OTs have held a presence in the NICU for decades, and due to the recent founding of the National Association of Neonatal Therapists (NANT), policy change, collaboration, interest and focus on the important role of neonatal therapists has grown substantially.
“The National Association of Neonatal Therapists was created in 2009 specifically for neonatal occupational therapists, physical therapists and speech-language pathologists. Founder Sue Ludwig, OTR/L, NTMTC, has done a phenomenal job to advance the science of the NICU through promoting professional collaboration and access to specialized continuing education for neonatal therapists,” shares Pineda, who is a NANT member. In addition, the American Academy of Pediatrics (AAP) has identified that a neonatal therapist should be on staff in NICUs designated as level three or four, as they take the most critical infants. Due to the high risk of developmental challenges and the potential impact of developmental interventions that start in the NICU, therapists are an important part of the NICU team. As interest in neonatal therapy increases, pathways for entering this practice setting are becoming better defined, and implementation of neonatal interventions for preterm infants continues to be improved.
Neonatal therapists must have advanced knowledge and training, as engaging with infants and their families in the NICU is often high-risk and requires specialized skills in neonatal intensive care. Pineda is the chair of the new Neonatal Therapy National Certification Board, which is charged with developing and implementing a certification process for neonatal therapists. “This is an important process, as it will provide those who want to engage in practice in this setting a pathway to achieve the skills and experiences needed to work with high risk infants. It also will ensure that therapists undergo specific education and training to prepare them for work in the NICU in order to ensure safe, competent, targeted and evidenced-based therapeutic interventions,” Pineda says.
“Ideally, we would love for premature birth to be eliminated completely. However, as long as infants continue to be born prematurely, it is critical that we figure out what the most effective intervention strategies are in the NICU, so that we can provide the best environment for babies and their families to optimize their health and outcomes,” Pineda says.
“Most students entering the lab are interested in being a neonatal therapist or have a strong desire to work with young infants. The students select their own research projects, which can range from breastfeeding to environmental exposures to early neurodevelopmental testing. Students within the OT NICU laboratory are encouraged to present at state and national conferences, and many publish their work in peer-reviewed journals,” Pineda says. “Educating the next generation of OTs and contributing to literature that can improve neonatal care is where I feel I can make the biggest impact on the profession.”
Pineda hopes her research and that of her students and colleagues will one day improve care in the NICU. “The point of intensive care is to necessitate lifesaving medical interventions. However, therapeutic interventions by a neonatal OT can be adapted to the medical environment and individualized for each infant, so that all care is intentionally supporting the infant’s development as well as the parent-child relationship. Waiting to introduce therapy until an infant is close to discharge or already discharged from the NICU fails to take advantage of a critical window of opportunity and the potential to impact the foundations of development that will support future participation,” she says.
“While the type and intensity of early OT may look different in the NICU compared to in the clinic, both can be done, and both can have significant effects on development. OTs are master clinicians in adapting their interventions to suit the needs of the client and the environment, and thus are an important part of the neonatal team. There is so much we can be doing in the NICU in terms of neuroprotective care to impact long-term outcomes. Our goal as researchers is to provide the evidence to support the best interventions that can improve care and optimize outcomes for infants and their families.”
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