Implementing Family-Integrated Care in the NICU

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.

Engaging patients to improve quality of care: a systematic review

“…In designing engagements, several studies pointed to the importance of clarifying the objectives, roles, and expectations of the engagement for patients/carers [ 40 – 45 ]. Approaches that gave users specific roles or engaged them in a formal structure such as a steering committee [ 45 ] or that enabled patients to set the agenda, develop shared mission and purpose statements and participate in all/most stages of the planning, administration, and evaluation made participants feel comfortable with the team and process, maintained patient involvement throughout the course of the process, and improved the quality of outcomes [ 41 , 45 – 50 ]. These techniques occurred in mental health, HIV, and pediatric service settings where patients were engaged to improve access to, and quality of, care or promote a culture change in the development and delivery of services.…”

“…An important strategy used in pediatric, diabetes, and home care settings was holding training sessions to prepare staff and patients, which provided clarity on roles and responsibilities, helped patients or carers understand how they could best contribute, sensitized participants to the contextual and cultural issues, and increased patients’ confidence and commitment to the engagement process [ 41 , 51 , 52 ]. Training also offered the benefit of building positive relationships between users, facilitators, and staff [ 43 , 45 , 49 , 53 , 54 ], which also served to mediate a key barrier identified: providers’ skepticism towards engaging patients and devolving power to them [ 42 , 55 ]. Therefore, these techniques helped to create a level playing field and support staff in their efforts to be partners.…”

Evaluation of the Family Integrated Care model of neonatal intensive care: a cluster randomized controlled trial in Canada and Australia

“…Volunteer veteran parents, who have had prior experience of having an infant admitted to the NICU, visit each NICU, organize recreational activities, and provide telephone support for families. This peer-to-peer support system aims to develop a sense of community among the FICare families [ 31 ]. Additional supports such as social work and psychiatric consultation are provided on an as-needed basis.…”

“…The principle of FICare is that in the NICU, families should be supported, educated, and empowered to provide as much of their infant’s care as they are able [ 27 , 28 ]. The FICare program includes a parent education program [ 29 ], a nursing education program [ 30 ], peer-to-peer support from ‘veteran’ parents [ 31 ], and adaptation of the unit policies, procedures, and other infrastructure as necessary, to provide social, psychological, and physical supports that enable greater parent participation.…”

Family Integrated Care (FICare) in Level II Neonatal Intensive Care Units: study protocol for a cluster randomized controlled trial

“…FICare for Alberta Level II NICUs is a dynamic, psycho-educational intervention with three main components: (1) information sharing (during one-to-one relational communications and bedside rounds), (2) parent education (one-to-one and group sessions) supported by technology and defined learning pathways, and (3) parental support from professionals (formal) and veteran parents (informal). Veteran parents [ 46 ] are those who have had previous experience with their own moderate or late preterm infant in a Level II NICU. The goal of FICare is a change in culture and practice that permits, encourages, and supports parents in their parenting role while their infant is receiving care in a Level II NICU.…”