Results Summary
What was the research about?
When infants are born early or have health problems, they get special care in the neonatal intensive care unit, or NICU, of a hospital. After leaving the NICU, infants can continue to have serious healthcare needs. Parents often have high levels of stress, anxiety, and depression during and after their infants’ NICU stay.
In this study, the research team tested a peer navigator program to improve parents’ mental health and confidence in caring for their infants. Peer navigators were parents with experience having a child in the NICU. The team compared parents who were in the peer support program with parents who weren’t in the program.
The research team looked at parents’ mental health and confidence. The team also looked at the infants’ health, hospital stays, and vaccines in the year after leaving the NICU.
What were the results?
After one year, parents who were and weren’t in the peer-support program reported similar decreases in stress, anxiety, and depression and increases in confidence in caring for their infants. Infant health, hospital stays, and vaccines also didn’t differ between the two groups.
Who was in the study?
The study included 300 parents of infants discharged home from the NICU at a hospital in Washington, DC. About half of the infants stayed in the NICU for less than 17 days. Of the parents, 44 percent were black, 39 percent were white, 8 percent were mixed race, 6 percent were Asian, and 3 percent were American Indian or Pacific Islander. The average age was 30, and 89 percent were women.
What did the research team do?
The research team assigned parents by chance to one of two groups. Parents in one group received support from peer navigators for one year. Hospital staff trained the peer navigators to provide support to parents in the study. Peer navigators contacted parents via phone, email, or in person to
- Learn their needs
- Connect them to resources, such as support groups
- Help them make and keep doctor appointments
- Answer their questions about insurance coverage and medical equipment
All parents in the study received a notebook to organize health records and information on community resources. The notebook also helped parents organize doctor appointments.
Parents filled out surveys at the start of the study and again one year later. The surveys asked about parents’ mental health and confidence in caring for their infants and hospital visits. The research team reviewed information on vaccines from the children’s health records. A psychologist assessed infant health.
Parents, doctors, and peer navigators helped design the study.
What were the limits of the study?
Not all parents in the program received the same amount and quality of support from the peer navigators. Results might have been different if peer-navigator support had been the same for all parents. Less than half of the infants were premature; many had NICU stays of less than one week. Results may have differed if the study included more infants who were premature or had longer NICU stays.
Future research could look at other ways to help parents and infants after leaving the NICU.
How can people use the results?
Hospitals can use the results when considering ways to help families after they leave the NICU.
Professional Abstract
Objective
To compare the effectiveness of a parent navigator program plus a care notebook versus the care notebook alone for parents with an infant discharged home from the neonatal intensive care unit (NICU) on improving parents’ self-efficacy and mental health
Study Design
| Design Elements | Description |
|---|---|
| Design | Randomized controlled trial |
| Population | 300 parents of infants discharged home from an NICU |
| Interventions/ Comparators |
|
| Outcomes |
Primary: parental self-efficacy, stress, anxiety, and depression Secondary: infant ED visits, hospitalizations, immunization status, developmental progress |
| Timeframe | 1-year follow-up for primary outcomes |
This randomized controlled trial compared the effectiveness of a parent navigator program plus an informational care notebook with the notebook alone for parents with an infant discharged from the NICU on improving parental self-efficacy and mental health and infant health outcomes.
The study included 300 parents of infants discharged home from the NICU at a hospital in Washington, DC. Researchers randomly assigned parents to one of two groups. Parents in each group received a care notebook that served as a medical appointment organizer and contained information about community resources. One group also received help from parent navigators for one year. Parent navigators were parents whose infants had received care in the NICU. Hospital staff trained these parents to provide support. To identify parents’ needs and connect them to appropriate resources, navigators contacted parents via phone, email, or in person. Navigators also helped parents make and keep doctor appointments and answered parents’ questions about insurance coverage and medical equipment.
Among the parents in the study, 44% were black, 39% were white, 8% were mixed race, 6% were Asian, and 3% were American Indian or Pacific Islander. The average age was 30, and 89% were female. About half of the infants stayed in the NICU for fewer than 17 days.
At baseline and one year later, researchers surveyed parents about their mental health, self-efficacy in caring for their infants, and number of infant hospitalizations and emergency department (ED) visits. Researchers obtained information on infant immunizations from medical records. A psychologist assessed child developmental progress at the end of the study.
Parents, clinicians, and peer mentors helped design the study.
Results
After one year, parents who received parent navigation and the notebook and parents who received the notebook alone had similar improvements in self-efficacy and reductions in stress, anxiety, and depression. The two groups also did not differ in infant hospitalizations, ED visits, immunizations, or developmental progress.
Limitations
Amounts and quality of support from parent navigators may have varied depending on expressed and perceived parental needs. The lack of standardization of the navigator program limits the ability of the researchers to draw conclusions about the program’s effectiveness. Less than half of infants were premature, and a quarter of infants had NICU stays of less than one week. Findings may differ in studies in which more infants were premature or had longer hospital stays.
Conclusions and Relevance
In this study, the parent navigator program plus the care notebook did not improve parental self-efficacy or mental health or infant health outcomes more than the care notebook alone.
Future Research Needs
Future research could help determine what other types of support help parents with infants discharged from the NICU.
Final Research Report
View this project's final research report.
Journal Citations
Results of This Project
Related Journal Citations
Peer-Review Summary
Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.
The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.
Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:
- The reviewers questioned how much involvement parents had in what the report described as focus groups. The reviewers noted that a focus group suggests a qualitative study was done, but the report did not describe the qualitative methods and results. The researchers added more detail about the methods and results of the focus groups and parent interviews to the report. The researchers noted that they used information from the focus groups to inform the intervention, but this was separate from the patient and stakeholder engagement work they conducted.
- The reviewers questioned the choice of self-efficacy as an outcome since it appears that there was little room to improve on this measure. They asked whether the decision was made based on pilot data, suggesting that study participants lacked self-efficacy. The researchers said that data from focus groups and interviews suggested that self-efficacy was an appropriate outcome, and that research literature suggests that self-perception of one’s own ability to parent is critical to new parents’ interactions with their newborns.
- The reviewers expressed concern that the outcomes measured in this study were not well aligned with the intervention. This may have led to the null study results when the parent navigation intervention could have a positive impact on different outcomes. The researchers revised their discussion to say that although the intervention did not affect the chosen outcomes, there was still reason to believe that peer-support programs such as this one should serve as a core principle of family-centered care in neonatal intensive care units.