Authors

  1. Macdonell, Kristy MSW, RSW
  2. Christie, Kristen BSc
  3. Robson, Kate MEd
  4. Pytlik, Kasia MSW, RSW
  5. Lee, Shoo K. MBBS, FRCPC, PhD
  6. O'Brien, Karel MB, BCh, BAO, FRCPC, MSc

Abstract

The purpose of this article is to describe and evaluate how "veteran" parents were engaged as experts in the design and implementation of a family-integrated care program in a Canadian neonatal intensive care unit (NICU). Three parents of preterm infants previously discharged from the NICU participated in the design and implementation of a family-integrated care pilot program. The steering committee for the program included 5 staff members (a physician, a NICU nurse, a parent education nurse, a lactation consultant, and a social worker) and the parent volunteers. This article includes a total of 42 mothers of infants born at 35-week gestation or less were enrolled in the pilot program. A detailed description and qualitative evaluation of the engagement of veteran parents in the design and implementation of the family-integrated care program. The effectiveness of engaging veteran parents in developing this model of care was evaluated by written feedback from the veteran parents and the other steering committee members. In addition, a structured interview at discharge with the 42 mothers enrolled in the pilot study was used to assess their experiences of the peer-to-peer support provided by veteran parents. Veteran NICU parents brought a wealth of wisdom and expertise developed through personal experience to the design and implementation of the family-integrated care program. The veteran parents played a significant role in both the initial development of the program and in the provision of peer-to-peer support during program implementation. Engagement of parents with prior experience of the NICU care environment is a critical step in the design and implementation of a program of family-integrated care.