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Implementing Family-Integrated Care in the NICU: Engaging Veteran Parents in Program Design and Delivery

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

Section Editor(s): Forsythe, Paula

doi: 10.1097/ANC.0b013e31829d8319
The Long Road Home

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.

Neonatal Intensive Care Unit, Mount Sinai Hospital, Toronto, Ontario, Canada (Mss Macdonell, Christie, Robson, and Pytlik); and Departments of Paediatrics (Drs Lee and O'Brien), Obstetrics and Gynaecology (Dr Lee), and Public Health (Dr Lee), University of Toronto, Ontario, Canada.

Correspondence: Karel O'Brien, MB, BCh, BAO, FRCPC, MSc, Department of Paediatrics, University of Toronto, Rm 775A, 600 University Ave, Toronto, ON M5G 1X5, Canada (

This project was funded by the Preterm Birth and Healthy Outcomes team and an Alberta Innovates—Health Solutions Interdisciplinary team grant (#200700595), with organizational support from the Maternal-Infant Care Research Centre, which is supported by the Ministry of Health and Long-Term Care, Ontario.

The authors thank the Family Integrated Care Steering Committee; our veteran parents; and the educators and staff of the neonatal intensive care unit, in particular Marianne Bracht, Salena Mohamed, and Yenge Diambomba, for their dedication to this project. They also thank Dr Ruth Warre from the Maternal-Infant Care Research Centre for providing editorial support.

The work was undertaken in the neonatal intensive care unit of Mount Sinai Hospital, Toronto, Ontario, Canada.

The authors declare no conflict of interest.

© 2013 by The National Association of Neonatal Nurses