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Individualized Family-Centered Developmental Care

An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease

Lisanti, Amy Jo, PhD, RN, CCNS, CCRN-K; Vittner, Dorothy, PhD, RN; Medoff-Cooper, Barbara, PhD, RN; Fogel, Jennifer, M.S.CCC-SLP/L; Wernovsky, Gil, MD; Butler, Samantha, PhD

doi: 10.1097/JCN.0000000000000546
ARTICLES: Congenital Heart Disease

Background Infants born with critical congenital heart disease (cCHD) who require surgical intervention in the newborn period are often hospitalized in a cardiac intensive care unit (CICU). Cardiac surgery and the CICU environment are traumatic to infants and their families. Infants are exposed to overwhelming stress, which can result in increased pain, physiologic instability, behavioral disorganization, disrupted attachment, and altered brain development. Individualized Family-centered Developmental Care (IFDC) is a model that can address the unique needs and developmental challenges of infants with cCHD.

Purpose The purpose of this article is to (1) clearly describe the uniqueness of the infant with cCHD, including the medical, neurological, and parental challenges, and (2) propose methods to apply IFDC to support recovery of infants with cCHD in the CICU.

Conclusions The experiences in the CICU shape the developing brain and alter recovery and healing, thus adversely impacting development. Individualized Family-centered Developmental Care is a promising model of care that nurses can integrate into the CICU to promote neuroprotection and development. Nurses can effectively integrate IFDC into the CICU by understanding the unique characteristics of infants with cCHD and applying IFDC interventions that include both maturity and recovery perspectives.

Clinical Implications The incorporation of IFDC interventions is essential for the infant with cCHD and should be a standard of care. Applying IFDC with a recovery perspective in all aspects of caregiving will provide opportunities for individualization of care and parent engagement, allowing infants in the CICU to recover from surgery while supporting both short- and long-term neurodevelopment.

Amy Lisanti, PhD, RN, CCNS, CCRN-K NRSA Postdoctoral Fellow, University of Pennsylvania School of Nursing; and Clinical Nurse Specialist/Nurse Scientist, Cardiac Nursing at Children’s Hospital of Philadelphia, Pennsylvania.

Dorothy Vittner, PhD, RN Nurse Scientist, Connecticut Children’s Medical Center, Hartford; and Faculty, School of Nursing and an Assistant Professor, University of Connecticut School of Nursing, Storrs.

Barbara Medoff-Cooper, PhD, RN Professor, Univeristy of Pennsylvania School of Nursing, Philadelphia.

Jennifer Fogel, M.S.CCC-SLP/L Pediatric Speech Language Pathologist, Advocate Children's Hospital, Oak Lawn, Illinois.

Gil Wernovsky, MD Senior Consultant in Cardiac Critical Care and Pediatric Cardiology, Children’s National Health System, Washington, District of Columbia.

Samantha Butler, PhD Developmental and Clinical Psychologist Director, Boston Children’s; and Assistant Professor in Psychiatry, Harvard Medical School, Boston, Massachusetts.

This work was supported by the National Institute of Nursing Research (NINR T32NR007100).

The authors have no conflicts of interest to disclose.

Correspondence Amy Lisanti, PhD, RN, CCNS, CCRN-K, University of Pennsylvania School of Nursing, 418 Curie Blvd, Philadelphia, PA 19104 (lisanti@upenn.edu).

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