Northwestern University clinicians are tackling the stress felt by parents of medically vulnerable infants with tools including a smartphone app that manages infants’ health data, educates on common neonatal ICU issues, and supports mothers’ and fathers’ mental health.

The app is part of a comprehensive research agenda undertaken by Craig Garfield, M.D., that aims to ease the transition of families from the NICU to home. Garfield and his colleagues also conducted a survey of parents whose children were recently released from the NICU.

In a study published in the Journal of Perinatal & Neonatal Nursing, 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,” Garfield said. “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. 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 app.

Garfield collaborated with Northwestern adjunct instructor Young Lee, 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,” Garfield said. “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, Garfield and colleagues are documenting what university officials called the "promising" results of the trial.

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