This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Each year, more than 400,000 newborns in the United States need special care because they are born early or have breathing or heart problems. These babies receive care in a special area of the hospital known as the neonatal intensive care unit (NICU). In their first year, babies who have been in a NICU often have serious healthcare needs. Parents of babies in a NICU often have high levels of stress, anxiety, and depression during and after the NICU stay. Past studies have found that short-term peer support programs can ease stress, anxiety, and depression for parents during the time their babies are in the NICU.
In this study, the research team wants to see if a long-term peer support program can improve babies’ health and parents’ mental health in the year after they leave the NICU. The peer support program connects parents who have cared for a child with special health needs (peer mentors) with parents of a child leaving the NICU. Peer mentors answer questions and offer support and resources such as help finding financial assistance programs or support groups. They also serve as a liaison between parents and doctors. The research team wants to see if parents who get long-term peer support are more confident that they can care for their child after leaving the hospital compared with parents who are not in the program.
Who can this research help?
Results from this study can help hospital directors decide whether to start or continue long-term peer support programs for parents of babies who have been in a NICU.
What is the research team doing?
There are two parts to this research study. In the first part, the research team is holding focus groups to learn what parents need when their baby is leaving a NICU. The focus groups include parents who have a baby in a NICU or a baby who just left a NICU, NICU staff, and peer mentors. The team is using what they learn from focus groups to develop the peer support program.
In the second part, the research team is enrolling 300 parents whose babies are leaving a NICU. All the parents get a care notebook when they leave the hospital. The care notebook has information about community resources and serves as a medical appointment organizer. The research team assigns half of the parents by chance to get a peer mentor for 12 months in addition to the notebook.
The research team is asking parents how confident they are that they can care for their babies. The team is also asking parents about their stress, anxiety, and depression. The team wants to know how often babies go to the emergency room or hospital, whether they get shots on time, and how often the families miss follow-up appointments. The team is comparing the group that gets the notebook and peer support to the group that only gets the notebook.
A stakeholder advisory panel is helping to plan the study and interpret data.
Research methods at a glance
Other Health Services Interventions
Training and Education Interventions