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.

Washington Times: Letter to the Editor

When your baby is born too soon, every decision in the NICU feels overwhelming. Families and their care team work side by side, making critical decisions every day guided by the best information available.

What we have seen in testimony from some of the formula lawsuits is that companies failed to report safety concerns and even death linked to their products. This means life-saving choices have been made without all the facts.

We at NICU Parent Network are not anti-formula. We know doctors need every safe tool in their toolbox. What we are asking for is quite simple: transparency, accountability, and informed consent. Parents deserve to understand the risks and benefits of every nutrition option, and every baby deserves the safest possible start to life.

We do not believe a sweeping liability shield is the answer. We believe collaboration is the key to developing solutions that are truly family-centered.

READ THE ARTICLE

Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families

Families in the Neonatal Intensive Care Unit (NICU) experience significant psychological distress. Fellowship training requires education on mental health issues. No standardized program exists. We evaluated the impact of an online course, combining research with family perspectives, on neonatology fellow knowledge and self-efficacy when emotionally supporting NICU families.

NPN Executive Director & Founder, Keira Sorrells, is a Co-Author.

READ PAPER

“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.

READ PRIMARY PAPER

READ PARENT EDITORIAL

“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

READ ARTICLE

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.