Individualized Family-Centered Developmental Care for Infants With Congenital Heart Disease in the Intensive Care Unit

Abstract

Background Individualized family-centered developmental care (IFDC) is considered the standard of care for premature/medically fragile newborns and their families in intensive care units (ICUs). Such care for infants with congenital heart disease (CHD) varies. Objective The Consortium for Congenital Cardiac Care– Measurement of Nursing Practice (C4-MNP) was surveyed to determine the state of IFDC for infants younger than 6 months with CHD in ICUs. Methods An electronic survey was disseminated to 1 nurse at each participating center. The survey included questions on IFDC-related nursing practice, organized in 4 sections: demographics, nursing practice, interdisciplinary practice, and parent support. Data were summarized by using descriptive statistics. Differences in IFDC practices and IFDC-related education were assessed, and practices were compared across 3 clinical scenarios of varying infant acuity by using the χ2 test. Results The response rate was 66% (25 centers). Most respondents (72%) did not have IFDC guidelines; 63% incorporated IFDC interventions and 67% documented IFDC practices. Only 29% reported that their ICU had a neurodevelopmental team. Significant differences were reported across the 3 clinical scenarios for 11 of 14 IFDC practices. Skin-to-skin holding was provided least often across all levels of acuity. Nurse education related to IFDC was associated with more use of IFDC (P < .05). Conclusion Practices related to IFDC vary among ICUs. Opportunities exist to develop IFDC guidelines for infants with CHD to inform clinical practice and nurse education. Next steps include convening a C4-MNP group to develop guidelines and implement IFDC initiatives for collaborative evaluation.

Neurodevelopment in the Congenital Heart Disease Population as Framed by the Life Course Health Development Framework

“…One evidence-based intervention for supporting infant development in the intensive care unit is Individualized Family-Centered Developmental Care, which is standard of care in the neonatal intensive care unit. 29,77 The IFDC model is based on the Neonatal Individualized Developmental Care and Assessment Program, which has shown positive outcomes in neurodevelopment, 41,77,78 in addition to decreased intensive care and hospital length of stay. 29,41 One cornerstone of Individualized Family-Centered Developmental Care is environmental protection, which focuses on reducing adverse stimuli in the physical intensive care unit environment, such as excessive light and sound, and protecting the infant from those exposures and subsequent adverse physical and behavioral responses.…”

Wayfinding through the “ocean of the great unknown”: how lactating parents establish a direct breastfeeding relationship with an infant with critical CHD

“…Furthermore, there is a growing interest in individualised, family-centred developmental care as a way to counteract the negative impact of the hospital environment for infants with critical CHD and their families. 45 This approach advocates cue-based, developmentally appropriate infant care; supports parental engagement in caregiving processes; and has potential to improve breastfeeding outcomes through neuroprotective practices such as skin-to-skin care 46 and infant-driven feeding. 47 Unfortunately, as in the case of the parent who perceived the healthcare team as primarily concerned with "preserv[ing] the function of the human body" (19), many of the participants in this study described dismissive, inflexible hospital environments that operated in stark contrast to developmental care principles.…”

Developmental Care for Hospitalized Infants With Complex Congenital Heart Disease: A Science Advisory From the American Heart Association

“…Currently, developmental care is not routinely budgeted for or integrated into most pediatric cardiac programs. 12 , 13 , 15 Resources allocated to developmental care and infrastructure vary across programs. 13 Major challenges to implementing developmental care in units caring for infants with complex congenital heart disease include lack of funding, time, staff, and support for education.…”

“… 13 Major challenges to implementing developmental care in units caring for infants with complex congenital heart disease include lack of funding, time, staff, and support for education. 12 , 15 Developmental evaluations and interventions are not consistently reimbursed through third‐party payers; many programs pursue philanthropic support to provide these services. 73 Research‐based funding for large trials to implement developmental care will be invaluable to demonstrate effectiveness and cost savings to secure future institutional financial investments.…”

“…Despite calls for a paradigm shift in clinical practice in the early 2010s to include developmental care, 11 variation in practice and barriers to developmental care have persisted over the past decade. 12 , 13 , 14 , 15 The purpose of this advisory is to (1) briefly describe the burden of developmental disorders and disabilities for infants with complex congenital heart disease, (2) define the potential health and neurodevelopment benefits of developmental care for infants with complex congenital heart disease, and (3) identify critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease.…”