Infants born with congenital heart disease (CHD) are some of the most fragile patients, often requiring surgery or other interventions in the first few months after birth. They also face a higher risk of developmental delays, learning disabilities, and behavioral problems than children born with a healthy heart.
To help mitigate these developmental challenges, a team of clinicians at Boston Children’s Hospital has started to implement individualized developmental care practices within the Cardiac Intensive Care Unit (CICU).
“We know that children with CHD are at risk for long-term difficulties in development once they leave the intensive care unit, and we believe implementing certain modifications, which we call individualized developmental care, in the CICU can lead to positive changes in their long-term development and quality of life,” says Samantha Butler, PhD, a developmental and clinical psychologist in the Cardiac Neurodevelopmental Program, one of the clinicians who has taken the lead on this initiative, along with Christine M. Rachwal, MSN, RN, CCRN, CWOCN, a nurse practice specialist in the CICU.
Using NIDAP concepts
Butler says they began by using the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), the only evidenced-based program of developmental care, which was created at Boston Children’s by Heidelise Als, PhD.
“NIDCAP has proven to improve long-term outcomes for infants born preterm in the NICU, and for many NICUs this approach is the standard of care. However, it is less well known in cardiology,” says Butler. “That’s where we are really unique here at Boston Children’s. We are implementing NIDCAP on cardiac infants in the CICU and altering our caregiving and the environment to provide the most developmentally appropriate care for our infants. Our infants are similar to the preterm population in that they are attempting to grow and develop while in the hospital at a very critical period of brain development. In addition to that though, most of our cardiac infants are also trying to heal and recover from major surgery and other cardiac interventions.”
Butler and Rachwal began the Cardiac Developmental Care Committee in the CICU. “We discussed bringing NIDCAP into the CICU, using Sam’s expertise in developmental care and my ability to integrate evidence-based practice through educational programing,” says Rachwal. “We started by bringing nursing leadership into the discussion and explaining the importance of this program, because we knew it was critical to create buy-in from the top to make real changes in practice. With their backing, we were able to bring the program forward to the CICU.”
Butler explains that the infant brain has certain expectations, such as closeness with the mother’s breast, body, and family for proper development. When the brain is exposed to a more technical environment, with increased light, sound, discomfort, pain, and separation from family, this leads to a mismatch between what the brain expects and what it actually receives. “NIDCAP focuses on reading infant cues and assessing the individual infant’s behavior,” says Butler. “Our goal is to understand the infant’s strengths and weaknesses, read what the infant is telling us, and figure out how we can alter care practices and the environment in the CICU to align with the infant’s expectations while also providing the medical care the infant needs.”
She says this includes reducing environmental stress, such as reduced sounds and lights, providing care while following the infant’s cues of stress or relaxation, as well as supporting the family as the infant’s primary caregivers.
Creating a ‘team of champions’
“We knew that we needed to involve the whole care team, so we developed a wide-ranging interdisciplinary ‘team of champions’ that included bedside nurses, nurse practitioners, clinical assistants, respiratory therapists, physicians, surgeons, physical therapists, occupational therapists, music therapists, child life specialists, and feeding therapists,” says Rachwal. “These individuals took a four-hour training course, developed by myself and Sam, in the simulation lab where we provided information on the NIDCAP approach.”
To date, Butler and Rachwal held four trainings in two years and there are now more than 40 clinical champions in the CICU. In addition to the NIDCAP training for the champions, they provide ongoing training for the entire unit. For this educational endeavor, they broke down the material down into smaller modules, such as understanding the long-term development of children with CHD, the importance of developmental care, light and sound reduction, reading infant cues, and supporting families. From these educational modules, “we created a task force to specifically address these concerns of light and sound in the CICU,” says Rachwal. In addition, Butler and Rachwal are currently working with interdisciplinary experts to develop a holding protocol so that infants in the CICU are held by their family more often.
A cultural shift
Rachwal says they understand that implementing all of these changes will take time. “Although we’ve been practicing some pieces of NIDCAP all along, it’s a huge cultural shift and it will take a lot of re-teaching to implement the entire NIDCAP approach. We want to do this well. We’re also aware that we may need to make modifications based on our cardiac population, and so we are listening to feedback and concerns from the staff throughout practice implementation.”
To help monitor their progress, Butler and Rachwal have an ongoing quality improvement project in the CICU, looking at the key drivers in implementing developmental care and tracking progress in providing developmental care using bedside audits of caregiving in the CICU. “We can show we’ve been improving over time, and we can see specifically where the improvements have been made, such as after our trainings, and we know where additional interventions are necessary,” says Rachwal.
The group has already published a summary of their work in two journal articles, and Butler says they are hoping to write up their complete approach in another journal article. In the future, she hopes to research the effect NIDCAP practices and long-term outcomes in cardiology.
“For our population, the outcomes have not been studied yet,” says Butler. “We’re relying on data from other fragile infants, but we need to carry out our own studies in cardiology and follow these babies over time to show the positive impact of individualized developmental care on the cardiac infant in the CICU.”
Both Butler and Rachwal are also hoping to train more clinicians in cardiology and hospital staff in the NIDCAP techniques. “Every provider and staff member contribute to a child’s care and can benefit from knowing NIDCAP,” says Butler.
Rachwal agrees. “It’s very exciting for me to see our techniques used when I’m mentoring staff, and when people tell me that they see it’s having an impact. I think parents are noticing a lot of the changes, too.”
Butler and Rachwal will be presenting on their quality improvement efforts at the NIDCAP annual meeting at Boston Children’s as well as at the 8th Annual Scientific Sessions of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), both in October of this year.
Read the team’s most recent journal article, published in the Journal of Cardiovascular Nursing.
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