Linda S Franck, PhD, RN, FRCPCH, FAAN, Karel O’Brien, MB BCh BAO, FRCP(C), MSc

Introduction:

Safe and high-quality neonatal care is best provided with the involvement of the infants’ parents/primary caregivers (1). This is supported by research showing the harm caused to infants, parents, family systems, healthcare professionals, and healthcare delivery systems when family- and community-centered neonatal care is not provided. Despite strong evidence, knowledge, and intention, most NICUs do not fully and consistently practice family-centered care, and care delivery remains predominantly provider and organization-centered. Now that there is strong evidence for a range of approaches for achieving family-centered care, the debate has shifted to be less about whether or not to provide family-centered care but rather how best to do so. Unfortunately, this shift has still not resulted in a noticeable improvement in the implementation of family-centered care. Instead, it may have distracted from the fundamental reforms needed to overhaul the neonatal care delivery model.

Changing clinical practice is hard (2). Sharing power and redistributing resources is even harder. Nevertheless, we are all called to do this hard work as part of our social contract as health professionals. For many decades, the Gravens conference has been a forum for healthcare professionals and family advocates to exchange knowledge, share innovative new practices, discuss ethical and social issues and recommit to advocacy and action to improve family and infant outcomes. At the 2023 Gravens conference, a session was devoted to discussing some of the main evidence-based programs that include families as partners. By the end of the panel discussion, it was clear that each program offered a unique focus while sharing some common features. What was striking was that the programs were not mutually exclusive and that in an ideal NICU, different approaches could be employed concurrently or as needed to support infants and families for the benefit of all. It was clear from the discussion that implementation of any program required similar actions: a demonstrated commitment to change the unit (and hospital) culture to support the family partnership in care delivery; resources for (re)training and maintaining staff skills; and resources/redesign of systems to address the socioeconomic barriers to full family engagement and participation in care.

Our thesis is that the Family Integrated Care (FICare) model (3) is the ideal starting point for NICU care delivery redesign, addressing some of the most fundamental structural changes in unit culture and practice that can enable the successful incorporation of other specific family-centered care practices and programs. In this article, we summarize the key features of FICare and suggest resources for successful implementation.

Family Integrated Care (FICare): 

In the FICare model, parents/primary caregivers are welcomed as essential members of the infant’s healthcare team, and the team works together to promote parent involvement to the fullest extent possible. Crucial to implementing FICare is the partnership with former NICU parents (veteran, graduate, or alumni parents) in the core steering group to plan, implement and sustain FICare in each NICU. The expertise provided by families with lived experience in the NICU is essential to care delivery redesign and innovation. The FICare model is a comprehensive framework with four main pillars: NICU Environment; NICU team education and support; Parent education/psychological support; and Active parent participation/partnership. This model’s environment is designed or adapted physically and through policy change to support 24- hour parental presence/participation. The model includes healthcare team training and ongoing education and coaching on the importance of family engagement in caring for their infants and how best to support families to parent in the NICU. There is a program of parent-group education as well as individualized bedside coaching/teaching by the healthcare team. Parents receive psychosocial support from professionals and trained parent-peer mentors. Finally, parents actively participate in daily rounds and shared decision-making and provide direct care for their infant in collaboration with nurses and other team members. 

Multiple studies in level 2 and 3 NICUs worldwide have shown that FICare improves infant and parent outcomes compared with generic or unstructured family-centered care. See https://familyintegratedcare.com/research/ for a comprehensive list of FICare research. Improved infant outcomes include higher rates of exclusive breastfeeding, increased weight gain, shorter lengths of stay, and lower infection rates. In follow-up studies, preterm infants exposed to the FICare model during their NICU stay had more robust self-regulation, fewer challenges with sleep, eating, or communication, and less negative emotionality compared with infants who received NICU FCC. Improved parent outcomes for FICare compared with FCC include less stress and improved mental health for mothers and fathers, sustained post-discharge. The first study of FICare in the United States recently found improved weight gain and reduced nosocomial infections for preterm infants (4) and depression and PTSD symptoms for mothers after NICU discharge (under review) compared with unstructured FCC implementation. 

An extensive library of resources for implementing FICare can be found at: https://familyintegratedcare.com. The British Association of Perinatal Medicine has also guided the implementation of FICare: https://www.bapm.org/resources/ficare-framework-for-practice. Guidance on assessing leadership and institutional assets for implementing family-centered care principles can be found at: https://www.ipfcc.org. 

Once the structural aspects of FICare have been addressed, the work will naturally focus on specific areas where training or resources are needed. For example, improving healthcare team and family relational communication might be a priority. Units may also wish to incorporate additional evidence-based programs for improving parent-infant emotional connection. An important area of focus might be to engage the healthcare team and families in quality improvement initiatives to optimize neurodevelopmental care. Another priority might be introducing mental health screening, universal mental health support, and additional resources in trauma-informed care. Finally, additional attention may be needed to implement specific parent-delivered interventions to address feeding issues and pain management (5). 

While specific individual intervention programs may be implemented at any time, we argue that without the foundation of FICare, fundamental issues of partnership with parents at the unit level and environmental and psychosocial support for families and staff remain unaddressed. If not addressed, these fundamental issues will ultimately undermine the successful implementation of any given intervention. 

Implementing Sustainable Structural Change in NICU Care Delivery: 

Although it may appear daunting when seeing the entire FICare program in detail, in our experience, NICUs rarely start with a blank slate, and many NICUs have some aspects of FICare that can be built upon and nurtured. The partnership with families to complete the initial assessment of assets and needs is critical and a powerful resource to sustain team motivation when inevitable challenges or setbacks arise. Best practices for any successful organizational change can be deployed for FICare (see Table 1). 

For further evidence, implementation tips, and inspiration, please join us in person or virtually at the next FICare conference, September 30, 2023, in Toronto, Canada https://familyintegratedcare.com/conferences/ 

References:

1. Franck LS, Axelin A, Van Veenendaal NR, Bacchini F. Im- proving neonatal intensive care unit quality and safety with family-centered care. Clin Perinatol. 2023;50(2):449-472. doi:10.1016/j.clp.2023.01.007
2. Rolnitsky A, Bell CM. Sustaining Improvement Initiatives: Challenges and Potential Tools. Clin Perinatol. 2023;50(2):307-320. doi:10.1016/j.clp.2023.01.001
3. Family Integrated Care. About FiCare [Internet]. [cited 2023 Jun 15]. Available from: https://familyintegratedcare.com/about/
4. Franck LS, Gay CL, Hoffmann TJ, et al. Neonatal outcomes from a quasi-experimental clinical trial of Family Integrated Care versus Family-Centered Care for preterm infants in U.S. NICUs. BMC Pediatr. 2022;22(1):674. Published 2022 November 22. doi:10.1186/s12887-022-03732-1
5. Franck LS, O’Brien K. The evolution of family-centered care: From supporting parent-delivered interventions to a model of family integrated care. Birth Defects Res. 2019;111(15):1044- 1059. doi:10.1002/bdr2.1521

Disclosure: The authors have no disclosures.