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.

“The Culture of Research Communication in Neonatal Intensive Care Units: Key Stakeholder Perspectives”

In “The Culture of Research Communication in Neonatal Intensive Care Units: Key Stakeholder Perspectives” published in the Journal of Perinatology last month, we are reminded of the differences in perception of various aspects of neonatal research that exist between key stakeholders who are integral to the care of premature and medically fragile babies in the NICU
 
Lead author (and NPN Board Member) Jennifer Degl brought the very same survey results and draft of the paper to a few key NICU graduate parents (and fellow members of NPN including Executive Director Keira Sorrells) to further review and comment on. Their unique perspectives as NICU graduate parents allows them to intrepret the results in an integral way and to reflect and make recommendations on their own to being back to the hospitals and families they serve. These reflections were also published in the Journal of Perinatolgy as an Editorial to the primary paper.

“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.