Developmental Care at Boston Children's Hospital
Individualized developmental care has been shown to improve developmental outcomes among critically-ill hospitalized infants, including infants with congenital heart defects (CHDs). In this article, psychologist Dr. Samantha Butler describes the pioneering work she and others have done in establishing developmental care as best practice in the hospital nursery.
In this section
Developmental Risks Facing Infants with Complex Heart Defects
Infants with complex congenital heart defects require significant medical interventions, which can lead to postoperative complications, including neurodevelopmental issues.
The neurodevelopmental delay seen in children with heart defects is attributed to various factors, including the use of cardiopulmonary bypass, extracorporeal membrane oxygenation, and ventricular assist devices.
Environmental challenges in the CICU, such as noxious stimuli, painful procedures, and sleep disruption, also contribute to infant and parent stress, affecting brain development.
Developmental care aims to minimize the mismatch between the fragile infant brain's expectations and the stress and pain experienced in ICU environments.
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The Case for Developmental Care
Individualized developmental care (IDC), such as the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), has been proven to improve outcomes for premature and critically ill infants by enhancing brain structure and function, along with improving behavioral outcomes that endure beyond infancy and into school age.
In addition, NIDCAP studies report benefits for medical parameters such as decreased length of stay, earlier oral feeding, and increased weight gain, along with increased family engagement at the bedside, attachment to their infant, and confidence in caregiving.
There is overwhelming evidence for the positive effects of NIDCAP on families and children in the ICU, but there is variability in the impact related to varying methods and intensity of developmental care delivered.
Implementing Developmental Care
In an inpatient setting that provides NIDCAP, family members are regarded as their child’s primary caregivers and the central providers of ongoing support of their child’s clinical and developmental wellbeing.
NIDCAP promotes sleep by creating a calm and soothing environment by diminishing light, sound, and activity around the infant and family.
Beyond modification of the physical environment, specially educated and emotionally available health care providers (HCP) collaborate to promote family nurturing, respect and partnerships, and thereby reduce the patient and family’s stress.
This shifting of care from the typical task and discipline orientation to a relationship-based orientation is challenging and requires increased self-awareness of the professionals’ role from doer to facilitator and nurturer of growth and development.
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Special Considerations for the CICU
The extreme nature of the medical needs of the CICU population provide an extra layer of challenge with precarious patients, life threatening procedures, perilous lines and tubes, postsurgical obstacles, medical complications, extremely long hospital stays, comorbid medical conditions, large age range for patients, and traumatized families.
Despite such challenges, research has noted that education for the HCP, even in medically complex environments, can improve IDC practices in the ICU.
Elements of Model Implementation in Our Nursery
An increasing number of hospitals have implemented a model of developmental care which involves staff education, multidisciplinary collaboration, neurodevelopmental assessment, parent support, and research initiatives.
Developmental rounds, both multidisciplinary and bedside, provide opportunities for patient assessment, caregiver education, and system change. Parent support is integral to the model, with an emphasis on involving parents in caregiving and decision-making.
This content was reviewed by staff at Boston Children's Hospital.
Developmental services are best when they are local. Families local to Boston can receive developmental services from the Cardiac Neurodevelopmental Program. Families from other regions can click below to find local care.
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