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Roles and Experiences of Parents in Necrotizing Enterocolitis: An International Survey of Parental Perspectives of Communication in the NICU

Gadepalli, Samir K. MD, MBA; Canvasser, Jennifer MSW; Eskenazi, Yael BSN, RN; Quinn, Megan BSN, RN; Kim, Jae H. MD, PhD; Gephart, Sheila M. RN, PhD

Section Editor(s): Dowling, Donna PhD, RN; ; Thibeau, Shelley PhD, RNC-NIC;

doi: 10.1097/ANC.0000000000000438
Original Research

Background: Although partnering with parents is important to improving neonatal outcomes, no studies have investigated what parents are taught, remember, or experience when their child is afflicted with necrotizing enterocolitis (NEC).

Purpose: To characterize parental perceptions of communication and support they were given about NEC.

Methods: An online survey was developed, reviewed for face validity, and then administered to parents whose child had experienced NEC. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using a qualitative descriptive approach.

Findings: Parents (N = 110) wanted to know the risk factors and warning signs for NEC and wanted to be told as soon as their child was admitted to the neonatal intensive care unit (NICU). Information provided before diagnosis was felt to be poor by the majority of families, with only 32% feeling satisfied or very satisfied. No parent wrote that they were “scared” by information provided to them about NEC; in fact, parents were dissatisfied when they received “sugar-coated” information. Engaged parents were significantly more satisfied than those who were not informed, had their concerns and suggestions dismissed, or who had to advocate for their baby against clinician opposition (eg, activating the chain of command).

Implications for Practice: Areas for quality improvement include better communication and collaboration with parents through early engagement in NEC prevention using modalities beyond verbal instruction.

Implications for Research: More research is needed on how best to engage parents, especially to engage in prevention, and how doing so affects satisfaction and outcomes.

Section of Pediatric Surgery, Department of Surgery, University of Michigan, Ann Arbor (Dr Gadepalli); NEC Society, Davis, California (Ms Canvasser); College of Nursing, The University of Arizona, Tucson (Mss Eskenazi, Quinn, and Dr. Gephart); and Divisions of Neonatology and Pediatric Gastroenterology, Hepatology and Nutrition, UC San Diego-Rady Children's Hospital of San Diego, California (Dr Kim).

Correspondence: Samir K. Gadepalli, MD, MBA, Section of Pediatric Surgery, 1540 East Hospital Dr, SPC 4211, Ann Arbor, MI 48109 (

This study was carried out on behalf of the NEC Society.

Dr Gephart acknowledges research support 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 the Robert Wood Johnson Foundation.

The authors declare no conflicts of interest.

© 2017 by The National Association of Neonatal Nurses