In-depth Parent Interviews Identify Secrets of Success for Discharge from the NICU

Parents report five main areas of need during NICU discharge

Innovations in Pediatrics – Winter 2019

For families with a child in the neonatal intensive care unit (NICU), discharge day can be a mixed blessing. Although the immediate medical crisis may be over, parents are now responsible for their child’s care in a way they perhaps haven’t been before. Oftentimes, families don’t feel ready.

Anne Kim Mackow, MD, MPH

“There’s a big disconnect between when a patient is medically ready for discharge and when the family is actually ready for them to go home,” says Anne Kim Mackow, MD, MPH, a pediatric surgeon at University Hospitals Rainbow Babies & Children’s Hospital. “Oftentimes, the patient’s medical readiness for discharge doesn’t become clear until that last 48 hours. Efforts to help a family be ready really kick into high gear at that point, but it can feel like a big fire drill.”

To help improve the discharge process for NICU families, Dr. Kim and colleagues from other children’s hospitals nationwide did in-depth interviews with 16 parents who experienced NICU stays with 18 infants. Questions touched on how the NICU staff prepared the family for discharge, what worked well, what worked not as well and how comfortable the parent was before discharge to manage their child’s care at home.

Five main needs of parents emerged:

• Communication: Parents expressed the need for clear, consistent and ongoing communication with their healthcare team, especially during and after provider-to-provider handoffs.
• Parent role clarity: Parents said they wanted to be included in decisions about their child’s care and engaged in decision-making, but they often struggled to find a way to be involved.
• Emotional support: Parents asked for more emotional support and more reminders and encouragement from staff to use the resources available to them to help them manage stress.
• Knowledge and training: Parents asked for more training in how to handle unexpected events once their child was home, not just the basics of everyday care.
• Financial resources: Parents said they needed more financial support for the strain caused by the NICU hospitalization, especially identification of resources before discharge.

Based on these parent interviews, the research team has compiled a series of practical recommendations for clinicians to use in daily practice to help parents feel prepared and confident for the transition home from the NICU. These are published in The Journal of Pediatrics.

Highlights of NICU Discharge Recommendations for Clinicians:

• Help families find a pediatrician who is experienced and capable in taking care of medically complex patients.
• Empower parents to problem-solve – they will know their babies and routines better than their providers at times.
• Connect families with a community of parents whose children might have similar needs.
• Create opportunities for parents to have “dress rehearsals” for being home, so they can get used to not relying on monitors.
• Define an emergency/troubleshooting plan to help families and caregivers know what to do when faced with issues and complications common to their child’s condition.
• Evaluate parental financial needs early in the NICU stay.

Dr. Kim says she hopes this project will cause clinicians to make changes in how they support and communicate with NICU families – as it has for her.

“This work has changed how I talk to families,” she says. “It uncovered a lot of interesting perspectives. What do they really want to know for when they go home? What are things that they should look for? That’s a normal question that families ask, but it helps to put it into perspective. It’s important to set those expectations before the family leaves so they know which things are a big deal and which are not. It helps the family feel at ease when they go home and have a sense of what they should do.”

For more information about this project, please email Peds.Innovations@UHhospitals.org.