by Maribeth Slebodnik, Christina Wyles, Sheila Gephart
NEC-Zero Project, University of Arizona School of Nursing
When born early or fragile, infants are at risk for several complications but one that is not discussed enough is necrotizing enterocolitis (NEC), although it is the second leading cause of death and the major reason for emergency surgery for fragile infants in early life. NEC is a serious condition that affects infants, typically those born prematurely, but also infants with congenital heart disease. The infection that causes NEC in many cases causes inflammation of the bowel, which can lead to damage or perforation. The result can be lifelong complications and sometimes death. Through a project called NEC-Zero, our research team at the University of Arizona College of Nursing is dedicated to eradicating NEC. Prevention of NEC centers on early recognition of its signs and symptoms by both clinicians and parents, promoting the use of human breast milk and feeding protocols, and encouraging constructive communication between parents and the clinicians caring for their infant. Dr. Gephart joined Maribeth Slebodnik and Christina Wyles, who are both nurses and librarians, to elicit support to share the resources via an outreach award in spring 2018 from the National Network of Libraries of Medicine Pacific Southwest Region.
The NEC-Zero team built on recommendations to prevent and foster timely NEC recognition in this outreach project by strategically sharing their tools with those most likely to use them. Outreach to conferences of neonatal nurse practitioners, nursing scientists, parent advocacy groups, and librarians were fueled by an enhanced website, professionally developed parent-engagement materials, a forthcoming video, and two webinars that have been archived. Reaching a broad audience, the two webinars provided education about the National Library of Medicine (NLM) and information about NEC, its signs, symptoms, tools for NEC prevention and other resources. The first webinar, focused on consumer groups and librarians, Fragile Infants: Evidence-Based Resources to Help Parents and Providers, took place on 3/29/2018 with 78 active participants. A parent advocate, Erin Umberger, who served on the initial NEC-Zero workgroup and who co-leads the NEC Society watched the webinar with her young daughter, Caroline, who positioned her stuffed animals to join the fun (see picture). Erin’s daughter, Sarah, suffered from NEC and Erin works tirelessly to end NEC in her memory. The second webinar, designed primarily for health care professionals, NEC Zero Evidence Based Resources to Prevent Complications in Fragile Infants, was recorded on April 23, 2018 and reached 89 participants. The majority of attendees for both webinars stated that they were introduced to at least one health information resource or tool and that they learned a new skill they plan to use. Post-webinar evaluation responses were extremely positive, and many attendees cited their intention to share information about the signs and symptoms of NEC, the GutCheckNEC tool, the use of feeding protocols and other resources with parents and health care professionals.
The outreach award also enabled the NEC Zero team to update and provide Spanish translations for three brochures for parents and consumers about NEC – What is Necrotizing Enterocolitis, Prevent Complications and Expecting a Preemie. The brochures were updated with recent research-based information and translated into Spanish. The translation was reviewed and verified with native and non-native Spanish speakers. One attendee stated, “I work in a level three NICU with very low rates of NEC but never knew the resources that are out there for parents.” As another means of sharing information about NEC, the University of Arizona College of Nursing has hosted the NEC-ZERO website for several years. The outreach award made it possible to streamline the website, add information, and increase accessibility and mobile capability to reach a wider user group.
Close to 200 people attended the webinars, gaining knowledge about NNLM and NEC-Zero resources. Offering complementary nursing continuing education hours provided by the University of Arizona College of Nursing helped us reach a large nursing audience that included registered nurses and Advanced Practice Nurses. As an important element of the webinars, we shared information about important NLM resources such as PubMed, LactMed, PubMed Health, MedlinePlus, and PubMed Clinical Queries. The majority of attendees stated that they were introduced to at least one health information resource or tool and that they learned a new skill they plan to use. The tools they learned about include GutCheckNEC, the signs and symptoms of NEC, the importance of breastfeeding, how to share information with parents and colleagues, and how to encourage feeding protocols. Broad dissemination of these tools reached clinicians and parent advocates in nearly every U.S. state. It is our hope that reaching clinicians, librarians, and advocates for parents with these tools will ultimately improve neonatal care and lead to broader prevention of NEC.
Dr. Gephart acknowledges research support to design NEC-Zero from the Robert Wood Johnson Foundation Nurse Faculty Scholars Program (72114) and the Agency for Healthcare Research and Quality (K08HS022908). The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality or Robert Wood Johnson Foundation. We thank the University of Arizona Health Sciences Library for sponsoring Ms. Slebodnik’s critical role in this project.