Education Program at NewYork-Presbyterian Empowers NICU Parents

Added on Nov 17, 2016

Education Program at NewYork-Presbyterian Empowers NICU Parents
By Audrey Doyle
Industry Edge November 2016

Although an infant’s discharge from a neonatal intensive care unit should feel like a victory to all NICU parents, for some it can also feel extremely stressful and overwhelming, especially if the baby has ongoing health issues the parents need to tend to or monitor.

After learning through patient care follow-up calls and 2014 Press Ganey patient experience survey scores that some NICU parents felt anxious and apprehensive and questioned their proficiency in caring for their vulnerable babies once they were home, NICU nurses at NewYork-Presbyterian’s Morgan Stanley Children’s Hospital began implementing in 2015 an education program that provides parents with additional, one-on-one support and instruction prior to discharge.

The program ensures that parents of vulnerable newborns feel prepared to meet their babies’ needs once at home and has resulted in measurable and sustained increases in the facility’s patient experience survey scores. The most notable improvements have occurred in the Discharge Information section of the survey, with 2015 mean scores of 90.3 (up from 88.4 in 2014) in the “Prepared for discharge” question and 92.3 (up from 90.3 in 2014) in the “Information about follow-up care” question. Furthermore, the facility’s percentile ranking increased 23% during that same period.

“It’s been a huge success for NICU parents and for us,” Regina Valencia-Companioni, RN, BSN, said of the parent education program that she co-developed and oversees with NICU colleague Kristy Lozina, BSN, RNC-NIC, CLC, and which the two discussed in a session at Press Ganey’s 2016 National Client Conference in Orlando earlier this month. “Our NICU parents are very appreciative of the additional help this program gives them, and we’re grateful and honored that we can help support them through what’s probably the scariest, most worrying and stressful time of their lives.”

A Foundation of Support

The NICU first began offering extra support to parents in 2014, when the facility’s patient care director and Unit Practice Council (UPC) learned that a language barrier was preventing some parents from experiencing an optimal discharge process.

“We have a 62-bed NICU. Lots of our babies have parents who speak only Spanish or mostly Spanish and very little English, and these parents needed to have someone in the NICU who could communicate with them in their native language,” Valencia-Companioni said. “Since both Kristy and I are bilingual, we agreed to help them with the entire discharge process.”

Also around this time, the patient care director and the UPC discovered through patient care follow-up calls and 2014 Press Ganey patient experience survey scores that some parents were experiencing difficulties post-discharge that had nothing to do with a language barrier: Although the NICU nurses consistently provided excellent patient care and thorough education to all parents prior to discharge, some parents felt scared, anxious and unsure that they’d be able to meet their baby’s care needs once they were home.

For example, babies requiring short- or medium-term nutritional support after discharge must be sent home with a nasogastric (NG) tube, but some parents stated in patient care follow-up calls and surveys that they felt they would have benefited from extra support and instruction before discharge on how to insert the tube and check its placement.

“The parents were getting great support in the hospital by caregivers with specialized training in performing these procedures, but once they were home and they had to be the ones performing them, they realized they needed more: more time, more support, more practice and more chances to ask questions,” said Valencia-Companioni.

Although babies who are discharged with specialized medical equipment—such as NG tubes or monitoring, cardiac or respiratory equipment, for example—are seen at home by a visiting nurse who can walk the parents through the steps of using the equipment if they need extra instruction at that time, “we didn’t want any of our parents to feel unprepared post-discharge,” added Lozina. “They’re taking on the role of the caregiver. So we wanted to give them—while they were still in the hospital—whatever extra education and support they felt they’d need in order to be prepared for success upon discharge."

Today that extra education and support is provided by Valencia-Companioni and Lozina who, as dedicated resource nurses, meet one-on-one with parents as many times as necessary prior to their baby’s discharge from the NICU. “We offer this support to every parent who needs it,” Lozina said, emphasizing that the support doesn’t replace the discharge education the nurses provide at the bedside, but rather, reinforces it.

As Lozina explained, she and Valencia-Companioni start by determining which parents are ready to begin the discharge education process. To do this, they consult a discharge readiness tool they created listing the various criteria that must be met prior to discharge, including a preterm baby’s ability to demonstrate the necessary physiologic maturity as well as parents’ completion of training and education in areas such as infant CPR, car seat safety, medication administration and NG tube care. The discharge readiness tool also provides spaces to log the dates on which the criteria were met.

In addition to tracking each NICU baby, Valencia-Companioni and Lozina attend interdisciplinary rounds on a weekly basis to keep abreast of each baby’s health status, which provides further insight regarding which babies will be ready for discharge on which dates. Throughout this time, as the bedside nurses are teaching parents how to provide specialized care for their babies, they’re also letting them know about the parent education program. If parents request or appear to need extra support on specific skills, the nurses tell Valencia-Companioni and Lozina, who then start meeting with the parents to provide one-on-one guidance.

For example, lots of parents are nervous about NG tube feeding, and although the bedside nurses provide the most and best education possible during the time they’re with the baby, sometimes it’s not enough for some parents. “So we’ll work with these parents one-on-one until they’re no longer nervous,” said Lozina. “If they’re not comfortable giving their baby medication or they’re worried about remembering how to adjust their baby’s respiratory equipment, we work with them until they’re comfortable and confident in their abilities. Whatever the issue is, we walk and talk them through it.”

“We also let them know it’s OK to ask the same questions over and over and it’s OK to feel frustrated and want to practice a procedure five times, 10 times, however many times they need to until they feel confident and comfortable,” added Valencia-Companioni. “This is a chance for them to take a deep breath and ask questions that were already answered but that they may need to have answered again.”

Of course, not all questions concern the administration of specialized medical procedures. Sometimes, parents who may have been so focused on becoming proficient in the use of medical equipment may need a refresher on more basic issues, such as how to manage their baby’s reflux or care for their preemie’s circumcision. “Every situation, every family, every baby is different,” said Valencia-Companioni. “We’re here to cater to the parents’ needs, whatever they may be, and to give them the extra help they need to feel confident when they go home.”

This means that, as dedicated resource nurses, Valencia-Companioni and Lozina also focus on the emotional well-being of the parents. “They may be feeling angry and sad in addition to feeling scared and stressed, and they may need time to talk about all these emotions they’re feeling as a result of their baby’s condition. So we let them know we’re here for them in this capacity too,” said Valencia-Companioni. “And if they say they’ll want to continue talking to someone once they’re home with their baby, we make sure they leave with information on social workers and therapists they can consult.”

From “I Can’t” to “I Can”

According to Valencia-Companioni and Lozina, the parent education program has been a welcomed addition to the NICU since it was launched in mid-January 2015. What’s more, the facility has sustained the improvement it achieved on its 2015 patient experience survey: For Discharge Information on its most recent 2016 survey, the facility had a mean score of 91.7 on the “Prepared for discharge” question and a 95.0 on the “Information about follow-up care” question.

They added that strong leadership support has been vital to the program’s success. “By ‘leadership,’ I’m referring not just to management, but to everyone overseeing the baby’s care,” said Lozina. “The bedside nurse, clinical nurse specialist, neonatal nurse practitioner, neonatologist—everyone involved is a leader at some point in a baby’s life during a NICU stay. Having supportive leaders who allow us to meet the parents’ additional needs has been crucial.”

They also noted that the program has given them a profound sense of accomplishment. “Compassion plays a big part in what we do. We're with these parents during a very difficult and emotional time in their lives, and the more we work with them, they more of a rapport we build with them,” said Valencia-Companioni. Parents of babies with complex medical needs may interact with dozens of care providers during their NICU stay, she added, so having that one resource nurse who they can go to for added support provides much-appreciated consistency, which results in a special bond between the nurse and the parents.

And this bond is the first step on the parents' journey through life after the NICU.

“The NICU is a nerve-wracking, traumatic place for parents. When it’s time to start caring for their baby’s medical needs on their own, a lot of times they go into it thinking ‘I can’t do this,’” said Valencia-Companioni.

"We help them feel confident about starting their journey of caring for their baby," she concluded. "We give them the support they need so that they can say, 'Wow, you know what? I can do this.'"