Neonatology Fellow Medical College of Wisconsin Wauwatosa, Wisconsin, United States
Background: Infants with congenital anomalies are a significant portion of NICU admissions at level IV children’s hospitals. Research on parent experience in the NICU has focused on premature infants, and the perspective of parents of children with anomalies have not been well described. Objective: Our objective was to explore the experience of parents of infants with congenital anomalies discharged from the NICU. Design/Methods: Using a qualitative, descriptive study design, we conducted 17 semi-structured interviews with one or both parents of infants discharged home from our NICU with a diagnosis of a congenital anomaly within 1-6 months of NICU discharge. We used inductive qualitative content analysis to determine both manifest and latent themes from the parent interviews. Results: We interviewed 13 mothers and 5 fathers of 13 infants in individual interviews; one interview included both parents. The majority of parents were White. Their infants had anomalies including gastroschisis, congenital diaphragmatic hernia, tracheoesophageal fistula among others. 3 infants had multiple anomalies. Analysis revealed two overarching themes: challenges in the NICU that made the experience more difficult, and helpful behaviors and support in the NICU that made the experience easier. Among the challenges identified were need for better and consistent communication especially around discharge; the challenge of parenting in the NICU including being viewed as a ‘bad parent’, physically caring for a child attached to equipment, not being heard; changing health care providers; and the challenges of breastfeeding and pumping and inability to orally feed their baby. Themes related to helpful behaviors and support included primary nurses who were powerful advocates for their child; consistent and accurate communication; caring and supportive doctors; connection with other parents; being present in the NICU; and NICU resources such as supportive staff and Ronald McDonald house.
Conclusion(s): Parents of infants with congenital anomalies experience many challenges in the NICU; however, there are supportive resources and provider behaviors that make their experience better. Strategies to improve parent experience include consistent and accurate communication, validating parent feelings, consistent caregivers, and empowering parents to be more present in the NICU. This study is a preliminary step toward the development of interventions to better support this population of infants and parents in the NICU and ways to support their transition to home.
