September 24, 2002 Feature

Clinical Partnerships Offer Support To Infants and Families

by Susan Boswell

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It has been said that "it takes a village" to raise a child. In their professional lives, speech-language pathologists and audiologists are finding that it takes a team of professionals to serve patients and families. This is the first article in an occasional series that will take readers to various settings as The ASHA Leader explores different clinical partnerships.

Speech-language pathologists are increasingly bringing their ex pertise to teams in caring for the youngest patients as the survival rate of premature infants increases and neonatal intensive care units (NICUs) place a greater emphasis on developmental care and family involvement.

Gone are the days of noisy, bright NICUs with side-by-side isolettes. The focus on developmental care has led to interventions designed to minimize the stress of the NICU environment and promote the development of feeding and interaction with caregivers. Across the country, NICUs are being redesigned with these goals in mind by creating more space around the infant beds so families can be with their newborns 24 hours a day and have more privacy for bonding, early communication, and feeding, said Joan Arvedson, an SLP who works in the NICU at the Children’s Hospital of Wisconsin in Milwaukee.

"The role of the SLP with NICU teams is increasing as more hospitals adopt a focus on developmental outcomes," Arvedson said. "More SLPs will need to be well-trained and have the extraordinary knowledge to help support these infants and families."

SLPs who provide services in the NICU find themselves joining a unique medical culture that functions as an independent community with its own personnel, policies, equipment, and terminology, said Meri Ziev, an SLP in the NICU at Bethesda Memorial Hospital in Boynton Beach, FL. Service delivery in the NICU involves a paradigm shift from direct service delivery to forming a network of clinical partnerships on multiple levels. SLPs collaborate closely with members of the developmental care team that includes audiologists, occupational therapists, physical therapists, and allied professionals.

Some NICUs divide service delivery among the various specialties, while others teams, such as the one at Bethesda Memorial Hospital, provide transdisciplinary services through cross-training. "The rehabilitation team communicates daily regarding the roles and responsibilities for each infant, based on the infant’s schedules and needs," Ziev said. Needs may be related to parent education, developmental assessment and care, feeding plan/intervention, or discharge evaluations for referral to the Early Intervention Program through Part C of the Individuals With Disabilities Education Act (IDEA).

Recommendations from the SLP, which are made in person and in writing, follow further collaboration with neonatologists and other physician specialists who may be involved with the infant, such as the craniofacial surgeon and gastroenterologist.

"Our role is not so much to provide direct intervention, but to assist others in determining the ways that everyone who comes in contact with the infant can help facilitate early prelinguistic communication and feeding," Arvedson said.

"This emphasis on global developmental outcomes can determine how quickly an infant is discharged," she added.

Demonstrating Efficacy

But in order to demonstrate that speech-language pathology interventions in the NICU lead to better outcomes, more evidence-based research is needed. Research on infant feeding and swallowing in the NICU—like the population—is in its infancy, Arvedson said.

"Only a limited number of studies are evidence-based and most of the research is being done by physicians and nurses," Arvedson noted. "SLPs need to seek their own data, so that they can contribute to the research, and realize that there is value to clinical research at all levels of evidence."

While randomized clinical trials are the "gold standard" and yield the greatest level of evidence about the efficacy of an intervention, these studies are difficult to conduct for feeding, swallowing, and communication issues in the NICU. Existing studies may be limited with regard to design, number of subjects, and comprehensiveness, but they can suggest the need for more research and support clinical practice.

More research is needed on sucking, swallowing, and respiratory coordination in the development of normal and abnormal feeding processes, and how this translates into the best and most efficient oral feeding techniques and practices, Arvedson said.

Entering the NICU

Gaining access to the NICU has proved challenging for SLPs. Most SLPs cannot walk into the NICU and conduct research—or even provide services. The NICU requires specialized knowledge of infant development and the development of swallowing and communication, as well as medical conditions associated with low birth weight or prematurity, Arvedson said.

"We have to demonstrate knowledge and experience to help support these infants and families," Arvedson said. To help define the practice of SLPs in the NICU and identify skills needed to work in this environment, an ASHA ad hoc committee, chaired by Justine Joan Sheppard, is developing a position statement and technical report along with practice guidelines, and knowledge and skill statements (see sidebar above).

"SLPs who are interested in joining the NICU may want to contact other SLPs who have teamed in the NICU who can serve as mentors," Ziev suggested.

The journey to the NICU begins with a foundation in early intervention service delivery, a review of the literature, and completion of coursework that will provide cross-training. SLPs should identify the appropriate contacts within their hospital to obtain permission to observe the NICU as an attendee, and through their department or rehabilitation team, determine the training criteria for their facility, and gain supervised experience.

For Ziev, the hurdles in gaining access to the NICU have been worthwhile. "I especially like the necessity of teaming and hope that we can make a difference from the beginning."

Resources for professionals and parents can be found in The ASHA Leader Online.

cite as: Boswell, S. (2002, September 24). Clinical Partnerships Offer Support To Infants and Families. The ASHA Leader.

NICU Practice Documents

ASHA's Ad Hoc Committee on Speech-Language Pathology Practice in the Neonatal Intensive Care Unit is charged with examining this area of practice to determine and develop appropriate practice policy documents to explain, support, and guide ASHA members and other interested parties regarding speech-language pathology services to neonates and their families. The Committee is currently developing a position statement and a technical report on the role of the speech-language pathologist in the NICU. They also will be developing practice guidelines and knowledge and skill statements.

Committee members include Justine Joan Sheppard (chair), Joan Arvedson, Alexandra Heinsen-Combs, Lemmietta McNeilly, Susan Moore, Lisa Newman, Meri R. Ziev, and Diane Paul-Brown (ex officio). Alex Johnson is the monitoring vice president.

The comprehensive technical report will address topics such as: principles of best practice in the NICU; patient populations; levels of NICU care; the NICU environment; federal legislation; typical and atypical infant development; assessment, intervention, and family care; and training needs. The position statement will be based on the information included in the technical report.

All documents developed by the Committee will be available for peer review. For more information, contact Diane Paul-Brown by phone through the ASHA Action Center at 800-498-2071, ext. 4297, or by email at dpaulbrown@asha.org.



Emma's Story

At the center of the NICU team is the infant, like Emma, who was born at an estimated gestational age of 34 weeks—six weeks premature—and parents, like Melanie and Jerry.

On the night of May 11, Melanie and Jerry were attending Lamaze class at Bethesda Memorial Hospital in preparation for the arrival of their first child, when Melanie suddenly became ill and was taken to labor and delivery. Baby Emma, who showed signs of fetal distress and had a low heart rate, was delivered by emergency cesarean section. During the first minutes of life, an Apgar score was used as an index to evaluate her condition. On a 10-point scale, Emma's scores were two points at one minute, five points at five minutes, and three points at 10 minutes, indicating the need for moderate to extreme medical assistance. A chest tube was inserted, and Emma was admitted to the NICU on a ventilator with apnea, bradycardia, and cyanosis. Melanie was taken to the critical care unit, and Jerry stayed at the hospital to be with both of them.

"Logistically, everything changes," said Tonia Schoenfeld, a NICU nurse at Bethesda Memorial Hospital. "The parents have gone from planning to bring their baby home to having to find a way to be with their baby in the NICU. Sometimes the parents have other children at home, or transportation problems, or they themselves are hospitalized."

The experience of having a baby in the NICU is a very emotional one, Schoenfeld added. "The primary concern—wondering if the baby is going to survive—is devastating."

The first professionals to become involved in Emma's care were neonatologists and respiratory therapists, and later gastroenterologists and craniofacial surgeons. Emma's difficulties included respiratory distress syndrome, pneumothorax, patent ductus arteriosus, anemia, apnea and bradycardia, gastroesophogeal reflux, hyperbilirubinemia, and hypocalcemia. In addition, Emma was born with a unilateral cleft lip and an incomplete bilateral cleft palate, of which her parents were unaware prior to her delivery. A social worker was consulted because Melanie also was ill. Members of the nursing staff coordinated the various disciplines that became involved over time and were Emma's primary caregivers.

"Parent education didn't take place right away because of Melanie's illness," said Pam Malarney, a NICU nurse at Bethesda Memorial Hospital, "but we begin by explaining to parents everything that they see in the NICU and helping them understand their infant's problems and our plan of care. As the infant stabilizes, we try to get parents involved in their infant's care."

SLP Christine Cassio conducted a developmental assessment. Ziev provided a feeding assessment to determine when to initiate feeding and the techniques to be used. She also helped with positioning during feeding and provided parent education related to adjusted age, developmental expectations, and reading and responding to Emma's behavioral cues. Emma's parents took an active role in decision-making by selecting the type of feeding device to use.

"There were debates on how to approach feeding because she had so many complications. Ultimately, the team decided to allow for maturation, to see if Emma could learn to feed over time," Ziev said. In the context of her complications, immaturity became the overriding factor. Rather than take an extreme measure, such as surgery to insert a gastric tube for feeding, a deadline was imposed, based on estimated gestational age and developmental expectations. Emma succeeded in learning to feed and went home as planned, after a brief setback caused by a low hematocrit level.

Many other setbacks occured. During the transition from intravenous fluids to an oral gastric (OG) feeding tube, Emma developed feeding intolerance and required a change in formula. After oral feedings were started, Emma began to choke and desaturate, as the level of oxygen in her blood decreased. Teaming with a radiologist and NICU nurse, Ziev performed a videofluoroscopic swallowing evaluation. The study revealed Emma was aspirating when fed in the reclined position typically used for feeding healthy newborns.

The NICU team, Ziev, and Emma's parents all met to determine the minimum amount of formula Emma needed to take, within a predetermined amount of time, in order to meet her nutritional needs and avoid supplemental OG tube feeding. An individual feeding plan was developed, and the nurses, SLP, and her parents all tried to feed Emma the same way.

After eight weeks, Emma went home with a healthy future ahead of her. "Emma will need a cleft lip and palate repair," Ziev said, "but afterwards, she will be able to participate in typical childhood activities."



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