Imagine you are a new mom or dad whose baby was recently born at fewer than 32 weeks old. Your infant needs weeks-long, round-the-clock support in the hospital, but you do not have the job flexibility that allows you to spend time there, a trusted sitter to care for your other child/children or reliable transportation to get you there. You are overwhelmed, emotional and missing out on critical moments at the hospital, when you could get to know your baby and learn to manage their complex care and needs.
Each year, about 100,000 U.S. women give birth to babies considered very or extremely premature who require long-term stays in a neonatal intensive care unit (NICU) and who are at a high risk of developing chronic conditions. But not all parents get the formal training they need to keep their child healthy, which can cause mental health
issues for parents. To address the critical need for an effective, streamlined model of parent-driven care, Ashley Weber, PhD, RN, a practicing NICU nurse and assistant professor at the College, is piloting PREEMIE PROGRESS, a video-based intervention that helps parents understand, monitor and manage their infant’s care while in the NICU.
With the financial backing of a National Institutes of Health (NIH) grant, Weber and the College’s Center for Academic Technologies and Educational Resources (CATER) team designed and built the intervention to deliver education to overwhelmed, high-risk parents with low literacy and education through accessible, platformagnostic videos and optional worksheets. Parents can learn by watching the videos or completing worksheets
while doing laundry or caring for other family members at home. Specifically, PREEMIE PROGRESS provides family management skills including negotiated collaboration, care systems navigation, emotion control, outcome expectancy and more.
“If you can spend large amounts of time in the NICU, you get to learn; nurses educate you on the plan of care and you participate in rounds, getting to know your baby,” Weber says.
“I wanted to build an intervention that could help disadvantaged families learn outside of the NICU, so that when they are able to be in the NICU, they maximize that time and spend it caring for their baby as opposed to playing catch-up.”
Currently, Weber and her team are refining PREEMIE PROGRESS through iterative usability and acceptability testing. In October, they will start testing feasibility and acceptability of the refined intervention and study procedures in a pilot randomized controlled trial with 60 families over the course of two years. They anticipate the intervention will decrease parent depression and anxiety, increase infant weight gain and receipt of mother’s milk and reduce neonatal health care utilization. Weber then plans to submit a competitive R01 for additional funding to conduct an even larger trial.
Weber’s long-term goal is to become a leader in designing, disseminating and implementing sustainable family management programs to improve health outcomes in the NICU. Regardless of her success, she recognizes that the best thing she can do for her patients is to advocate for universal paid family leave, better childcare and transportation infrastructures.
“We can come up with all sorts of interventions for reducing parent and infant stress and changing the way providers deliver care in the NICU, but if a mom doesn’t have the money to pay for a babysitter so she can get to the NICU or doesn’t have paid leave and has to go back to work a week or two after birth, the chances of parent engagement in care
are extremely low,” Weber says. “I hope that PREEMIE PROGRESS empowers families who are at a disadvantage through no fault of their own. We want to give NICU families skills they can use for a lifetime, but these broader public health policies to support the social determinants of family success are really needed in order to move family research
forward in the NICU.”
By: Katie Coburn