Perspectives on Transition From NICU to Home
Perspectives on Transition From NICU to Home
Objectives: To describe the experience of a low-income population during the transition from the neonatal intensive care unit (NICU) to home and to compare these experiences with pediatrician perspectives.
Study Design: A prospective cohort study in a Level III, 40-bed NICU at a county hospital in Northern California affiliated with seven outpatient pediatric clinics. We surveyed parents in English or Spanish at discharge (n=79) and two weeks after discharge (n=49), along with outpatient pediatricians (n=17). Parents assessed experiences with discharge and the frequency with which barriers were encountered after discharge. We compared parent experiences with pediatrician estimates on four of these barriers.
Result: Spanish survey participants had more difficulty finding a NICU doctor (P=0.05) or nurse (P=0.001) to answer their questions. After discharge, 16% of families experienced significant challenges with two or more barriers. In contrast, the majority of pediatricians estimated that 50% or more families had significant challenges with all four barriers.
Conclusion: Communication difficulties were the most commonly reported barriers during the NICU stay and physicians overestimated the frequency that families experienced challenges after discharge. Parent input is important to create effective interventions aimed at improving care and limiting disparities.
Over the last two decades the rate of preterm births has increased significantly. Mortality rates have improved alongside this national trend, resulting in a higher percentage of infants being discharged home from the neonatal intensive care unit (NICU), many of whom have chronic health conditions. These infants have higher rates of health care utilization after discharge compared with healthy newborns. These patterns are more pronounced in patients from disadvantaged backgrounds, where studies after NICU discharge found differential rates of re-hospitalization, emergency department visits and prescriptions in patients of minority racial/ethnic status.
Thus, the transition of medically fragile infants from the NICU to home is a critical time period that warrants attention. The American Academy of Pediatrics states that all children with special health care needs (CSHCNs) should receive care in the medical home, which is defined as the one that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective. Children from low-income families, minority families and families with limited English proficiency are less likely to have a medical home. There have been few studies based on the factors that improve this transition within the NICU population and of the potential barriers faced by families after discharge.
To better understand issues surrounding the transition to the medical home for undeserved families, our study was designed to (1) describe the experiences of families during the discharge process from the NICU; (2) quantify barriers faced by NICU families during the transition from NICU to home; (3) identify differences between English and Spanish survey participants; and (4) assess pediatricians' perceptions of these barriers. We hypothesized that Spanish survey participants report more barriers to care than English survey participants, both during discharge preparation and after discharge. As the medical home providers for these infants, we hypothesized that outpatient pediatricians' perceptions of barriers will reflect families' experiences.
Abstract and Introduction
Abstract
Objectives: To describe the experience of a low-income population during the transition from the neonatal intensive care unit (NICU) to home and to compare these experiences with pediatrician perspectives.
Study Design: A prospective cohort study in a Level III, 40-bed NICU at a county hospital in Northern California affiliated with seven outpatient pediatric clinics. We surveyed parents in English or Spanish at discharge (n=79) and two weeks after discharge (n=49), along with outpatient pediatricians (n=17). Parents assessed experiences with discharge and the frequency with which barriers were encountered after discharge. We compared parent experiences with pediatrician estimates on four of these barriers.
Result: Spanish survey participants had more difficulty finding a NICU doctor (P=0.05) or nurse (P=0.001) to answer their questions. After discharge, 16% of families experienced significant challenges with two or more barriers. In contrast, the majority of pediatricians estimated that 50% or more families had significant challenges with all four barriers.
Conclusion: Communication difficulties were the most commonly reported barriers during the NICU stay and physicians overestimated the frequency that families experienced challenges after discharge. Parent input is important to create effective interventions aimed at improving care and limiting disparities.
Introduction
Over the last two decades the rate of preterm births has increased significantly. Mortality rates have improved alongside this national trend, resulting in a higher percentage of infants being discharged home from the neonatal intensive care unit (NICU), many of whom have chronic health conditions. These infants have higher rates of health care utilization after discharge compared with healthy newborns. These patterns are more pronounced in patients from disadvantaged backgrounds, where studies after NICU discharge found differential rates of re-hospitalization, emergency department visits and prescriptions in patients of minority racial/ethnic status.
Thus, the transition of medically fragile infants from the NICU to home is a critical time period that warrants attention. The American Academy of Pediatrics states that all children with special health care needs (CSHCNs) should receive care in the medical home, which is defined as the one that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate and culturally effective. Children from low-income families, minority families and families with limited English proficiency are less likely to have a medical home. There have been few studies based on the factors that improve this transition within the NICU population and of the potential barriers faced by families after discharge.
To better understand issues surrounding the transition to the medical home for undeserved families, our study was designed to (1) describe the experiences of families during the discharge process from the NICU; (2) quantify barriers faced by NICU families during the transition from NICU to home; (3) identify differences between English and Spanish survey participants; and (4) assess pediatricians' perceptions of these barriers. We hypothesized that Spanish survey participants report more barriers to care than English survey participants, both during discharge preparation and after discharge. As the medical home providers for these infants, we hypothesized that outpatient pediatricians' perceptions of barriers will reflect families' experiences.