Family-Centered Care at Pediatric Cardiac Intensive Care Units in Germany and the Relationship With Parent and Infant Well-Being: A Study Protocol

• Published in: Frontiers in pediatrics Vol. 9; p. 666904
• Main Authors: Ferentzi, Hannah, Rippe, Ralph C. A., Latour, Jos M., Schubert, Stephan, Girch, Alona, Jönebratt Stocker, Michaela, Pfitzer, Constanze, Photiadis, Joachim, Sandica, Eugen, Berger, Felix, Schmitt, Katharina R. L.
• Format: Journal Article
• Language: English
• Published: Frontiers Media S.A 12.08.2021
• Subjects: children; congenital heart disease; infant mental well-being; infant physical well-being; intensive care unit; parental mental well-being; Pediatrics
• ISSN: 2296-2360; 2296-2360
• DOI: 10.3389/fped.2021.666904

Rationale and Aim: Infants with Congenital Heart Disease (CHD) are at risk for neurodevelopmental delays, emotional, social and behavioral difficulties. Hospitalization early in life and associated stressors may contribute to these challenges. Family-centered Care (FCC) is a health care approach that is respectful of and responsive to the needs and values of a family and has shown to be effective in improving health outcomes of premature infants, as well as the mental well-being of their parents. However, there is limited empirical data available on FCC practices in pediatric cardiology and associations with parent and infant outcomes. Methods and Analysis: In this cross-sectional study, we will explore FCC practices at two pediatric cardiac intensive care units in Germany, assess parent satisfaction with FCC, and investigate associations with parental mental well-being and parenting stress, as well as infant physical and mental well-being. We will collect data of 280 infants with CHD and their families. Data will be analyzed using multivariate statistics and multilevel modeling. Implications and Dissemination: The study protocol was approved by the medical ethics committees of both partner sites and registered with the German registry for clinical trials (NR DRKS00023964). This study serves as a first step to investigate FCC practices in a pediatric cardiology setting, providing insight into the relationship between FCC and parent and infant outcomes in a population of infants with CHD. Results will be disseminated in peer-reviewed journals.