Parent Perspectives on Readiness for Discharge Home after Neonatal Intensive Care Unit Admission

The Journal of Pediatrics. 2019 Feb:205:98-104.e4.
doi: 10.1016/j.jpeds.2018.08.086

Loren Berman 1, Mehul V Raval 2, Madelene Ottosen 3, Anne Kim Mackow 4, Maria Cho 5, Adam B Goldin 6

• Affiliations

  1. Department of Surgery, Division of General Pediatric Surgery, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA; Department of Surgery, Division of General Pediatric Surgery, Nemours/Alfred I. duPont Hospital for Children, Wilmington, DE. Electronic address: loren.berman@nemours.org.

  2. Department of Surgery, Division of General Pediatric Surgery, Emory University, Children's Healthcare of Atlanta, Atlanta, GA.

  3. Department of Surgery, Division of General Pediatric Surgery, University of Texas Houston-Memorial Hermann Center for Healthcare Quality and Safety, Houston, TX.

  4. Department of Surgery, Division of General Pediatric Surgery, Rainbow Babies and Children, Cleveland, OH.

  5. InsideOut Medicine, Seattle, WA.

  6. Department of Surgery, Division of General Pediatric Surgery, Seattle Children's Hospital, University of Washington School of Medicine, Seattle, WA.

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ABSTRACT

• Objective

  To explore the parent perspective on discharge home from the neonatal intensive care unit (NICU).

• Study design

  We interviewed parents of NICU graduates with a range of demographic characteristics and medical complexities to explore parent perspectives on readiness for discharge. Interviews were transcribed and coded by a 6-member team. We performed content analysis to identify themes and develop a family-centered conceptual framework around readiness for NICU discharge.

• Results

  We interviewed a total of 15 parents who experienced NICU stays with 18 infants. Parents who have experienced NICU discharge have a spectrum of needs that evolve from the time the child is in the NICU, at time of discharge, and at home afterward. These needs consistently centered around 5 themes—communication, parent role clarity, emotional support, knowledge sources, and financial resources.

• Conclusions

  Parents described many ways the system could have better prepared them and connected them with essential resources. Summarizing the voices of the parents who participated in this study, we have compiled a series of practical recommendations for clinicians to use in daily practice to help parents feel prepared and confident for the transition home from the NICU.

• Future directions

  One strategy to improve patient and family engagement is to redesign pediatric surgery toward a pediatric perioperative surgical medical home that centers on patients and families30 and is associated with lower LOS and other benefits.86,87 Adapted from previously developed family-centered medical homes for children,88, 89, 90 pediatric surgical medical homes represent a coordinated approach to pediatric surgery, promoting standardization in perioperative systems to improve clinical outcomes