Long stays at the neonatal intensive care unit (NICU) are stressful for parents with high-risk premature infants. So is transitioning home afterward.
“Parents play an important role in a child’s ultimate developmental outcome,” he said. “Children thrive when parents thrive.”
In a study published in the Journal of Perinatal & Neonatal Nursing, Dr. Garfield’s team interviewed 25 parents of very low-birth-weight infants (VLBW) – babies born prematurely who spent two to three months in the NICU. The scientists wanted to determine the parents’ concerns and their coping mechanisms for the period following discharge from the hospital.
The parents reported anxieties about balancing work and family, sleep deprivation and their own knowledge gap. A major theme became apparent: uncertainty about the future health of their medically vulnerable baby.
“It was really eye-opening to discover what we called in the paper ‘pervasive uncertainty,’ the uncertainty parents describe across nearly all of their abilities to care for their VLBW infants at home,” said Dr. Garfield. “They may put up a very stoic face in the hospital, but behind that face they are very nervous.”
At the hospital, parents have access to professional caretakers, advanced monitoring systems, and social and psychological support. Dr. Garfield realized parents wanted an easy to use, trustworthy tool to provide information and anticipate their needs at home. The scientists developed such a tool, in the form of a smartphone application.
Dr. Garfield collaborated with Young Lee, adjunct instructor in Medical Social Sciences, who at the time was a scientist at Motorola Mobility. Together they designed an app called NICU-2-Home to help parents as they prepare to leave the hospital. Among its features, the app manages infants’ health data, educates on common NICU issues and supports mothers’ and fathers’ mental health.
“We wanted to take what we learned through our interviews and build a suite of services on NICU-2-Home that addressed the real needs of VLBW infants and their parents during one of the most difficult times in their lives,” said Dr. Garfield. “Our objective was to take this parent-empowering app, implement it in the NICU and test it in a randomized feasibility trial to see – really for the first time – can an app have a measurable effect on parenting? Can we build a base of scientific evidence to support all these mobile health technologies that are being rolled out?”
Currently, Dr. Garfield and colleagues are documenting the promising results of the trial.
In yet another study, the group looked at gender differences in information and computer technology usage. Specifically they compared how mothers and fathers of VLBW infants interacted with technology during the transition home from the NICU.
This research was funded in part by the Agency for Healthcare Research and Quality grant R21 HS020316-01.