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.