Our Impact

Highlighting the Many Ways we Work with Industry

The NPN provides a platform to bring the collective voice of NICU families to the forefront. We are often asked to participate in studies, surveys, and focus groups that guide advocacy and care guidelines. Below are just some examples of how the NICU Parent Network is providing a superior standard of insight and enlightenment on topics related to Maternal Infant Health.

“Quality of life”: parent and neonatologist perspectives

“NICU families were identified in two ways. First, Internet searches were conducted that generally identified active support or advocacy groups that specifically targeted NICU families. “Family” for the purpose of this survey was defined as “any individual who identified as a parent, guardian, or primary caregiver of a child who spent some time in the NICU”. Groups were defined as “active” if they had one or more posting online within the previous 3 months. The Preemie Parent Alliance, now the NICU Parent Network, was one of most significant contributors, distributing the survey via their multiple social media channels to the 37 member organizations under their umbrella. . . .”

Adams, S.Y., Tucker, R., Clark, M.A. et al. “Quality of life”: parent and neonatologist perspectives. J Perinatol 40, 1809–1820 (2020). https://doi.org/10.1038/s41372-020-0654-9

Parent Engagement in the NICU

NICU Parent Network was asked to participate in this survey as part of a research project to better understand parent engagement in the NICU. The research was being conducted by a Nurse Scientist at Connecticut Children’s Medical Center.