In our NICU, as I suspect in many other units, we have been actively involved in providing family-centered care practices for more than a decade. We did this to bring parents more into the fold of their baby’s care.
This has become increasingly challenging on so many fronts, given the rising complexity of neonatal care over recent years. Electronic medical records have increased our workload, the rise of quality and safety cultures has made for greater accountability, as well as lower tolerance to error and missteps. We are more defined by policies and protocols. Delivering care requires more multitasking and focus on all these tasks.
Meanwhile, we attempt to continue to maintain family-centered care in all this.
Parents, on the other hand, have increasingly become more savvy to medical knowledge (maybe we can blame television medical shows for this), and have greater needs for information and transparency of process than ever before. They also expect results in real-time.
A recent article by Sue Hall and colleagues reminds us of the evolutionary processes that are taking place as we try to incorporate more structured Family Integrated Care models alongside a multifaceted holistic approach to the family-centered model with aspects of staff education, developmental care, involvement of mental health professionals, peer-to-peer support, palliative/bereavement care, and post-discharge followup.1
One thing I really like about the proposed neonatal intensive parenting unit (NIPU) model is that the wellbeing of the staff is included. It is vital to recognize that a program that is more engaging and complex will add more stress to the staff. We all know it is far easier to follow a rigid form of care delivery where every process is orderly and structured. Think scheduled feeding versus cue-based feeding or bottle feeding versus breastfeeding. Building the family into the daily workflow is much less predictable.
Family Integrated Care (FICare) is a prescriptive program embedded at the center of NIPU where the amount of time and involvement of parents in their child’s care is significantly higher than the norm. This can be developed in a very structured manner with defined and measurable outcomes.2
The Baby Friendly Hospital Initiative journey to promote couplet care (mother-baby dyad) as the norm of healthy newborn care instead of separate newborn nurseries continues to take time to envelope the majority of birth hospitals. I see a similar journey with the growth of NIPU or like evolutionary approaches to family centeredness.
It is clear to me that most parents want to be more informed, more involved, and more educated on how to best take care of their preterm and/or sick child. Instructing them on the simplest task is incredibly empowering.
For example, the message to mothers to provide the smallest early drops of colostrum has an amazing effect on mother’s sense of contribution to an overwhelming, helpless process.
Expounding on the benefits of skin-to-skin time for mothers and supporting their time physically bonding with them is another powerful enabling experience when all things appear so complex and scary in the NICU.
Parental involvement in the NICU
Parents need and instinctively want to be present more. Parents need to be allowed into the day-to-day care of their children. They need to be invited in the medical management of their infants. And we need to listen more to parents regarding how they feel, what they understand, and what they anticipate is going to happen next. We need to give parents more credit for their ability to learn the NICU lingo and triggers that we react to and why.
The involvement of parents is a key to the prescription of newborn care no matter how sick that child is.
I learn each day that I talk to parents that every individual has a very different education and emotional capacity to care for their child. Immediately bringing them into the circle of care from the time of admission to listen to their story as they see it is powerful.
Parents inherently want the best for their child. The medical interface is an incredibly dominant and overpowering presence. Add in a language barrier and there is further loss of control. Barriers need to fall where parents feel comfortable expressing their perspective, feel unafraid to speak up, and share. Change in workflow needs education and patience as staff and parents get used to a different way of conduct.
I am always pleasantly surprised by how knowledgeable mothers become over time with their babies (fathers too, but most of the time it is the mother who is most present). Some seem to earn half a degree in the process!
Asking mothers gives me clues to their child’s overall progress: How active were they? Have they changed the way they look? More yellow, pale, puffy? What happened in the past 24 hours? Many times the richness of the dialogue (although not medical) informs me greatly of the health of their child, often providing subtle details that may not have been gathered with a nurse taking on their child as a new assignment.
I receive the richest information from those mothers who stay with their child the longest. I have no doubt that my team makes better decisions armed with this kind of data. This is one premise of FICare.
Enabling parental involvement
Integrating family more does require large change in culture, both in having parents around more often, and involved in the medicalized care of their infants.
And yet, there are far too many reasons for parents not to be present in the newborn’s care. Their work, other children, cost of travel and parking, etc. A change in priority will not eliminate the hardship, but it will change the presence of parents in the hospital. In many countries having parents in the NICU is the norm because the care of their infant would not take place without them.
In our NICU we have been revisiting the construct of taking care of our tiniest babies as we have moved to the single-family room (SFR) design.
One observation I have (as we have been open for more than eight months), is that while parents appreciate the privacy and additional space, there is a void we created where the convenience of the NICU alongside the sterility and modernness of the NICU further separates some parents from feeling at home with participating in their child’s care.
Our system at times looks so well equipped to take care of their child that we risk making parents feel superfluous or marginal. I can’t state how important visual contact and communication was in an open NICU in creating a community feeling of parents and their child and setting up cultural norms. The changeover in NICU architecture to SFR design now makes it imperative that we adopt FICare type philosophy as the isolation of newborns is a new risk that we are imposing passively onto our patients.
What we’ve learned
Communication is the most important foundation of building the family-centered community we want.
When I round each morning on service, far less than half the rooms have parents in there to witness the rounding process despite our open policy. This means that mechanisms need to be put in place to reach out to these parents later in the day to communicate the plan and to include in their perspectives.
One of the foundations to start with family-centered care is developing the bidirectional nature of the communication with parents. Fortunately, several innovative processes are becoming available, whereby parents and the medical team can begin to communicate with each other through video or mobile apps means. Such strategies clearly make the connectivity with the medical team more immediate and bring technology to our aid in supporting better communication.
The NIPU concept proposed in Hall’s paper is a novel and evolving care model that we may all learn from. It incorporates several different aspects of care together to facilitate intensive parenting as early as possible.
The perspective of the family unit as collaborators and our professional roles as mentors are paradigm shifts that need education and time for adoption. A happy and well-functioning family equals a happy and well-functioning baby.
It is no longer a progressive perspective, however, to simply state that you have moved beyond the care of the baby and envelope the family into the care circle. The gap is providing real structure to our family-centered care model so that newer processes that have been shown to benefit the child and family can be integrated.
Building such a dynamic and energized model of care and pushing a better delivery of quality in a NICU is not easy. It will require more resources, education and collaboration of multiple disciplines along with administration.
What more can you and your unit do?
- Review your unit’s family-centeredness and its processes.
- Identify your champions who see the benefits of a NIPU type model.
- Build the processes into your quality improvement apparatus so objective measures can be taken. You may need these to help bring in resources.
- Develop consistent communication pathways where parents are involved, heard, and are true collaborators of care.
- Talk to your parents about what would be better.
The trend towards SFR in NICU design is not going to stop. It may be a while before we see parental leave lengthen for childbirth. Economic constraints will always persist for many.
In the meantime, we need to embrace a family-centered, family-integrated, and holistic model of wellness that ensures that NICU care thrives no matter how sick or complex the infant is that we take care of. Each day it can start by not forgetting to ask mom or dad what’s up with their baby. Ask for their story.
This will change our world.
- Hall SL, Hynan MT, Phillips R et al. The neonatal intensive parenting unit: an introduction. J Perinatol. 2017 Aug 10. PMID: 28796241.
- O’Brien K, Bracht M, Robson K, et al. Evaluation of the Family Integrated Care model of neonatal intensive care: a cluster randomized controlled trial in Canada and Australia. BMC Pediatr. 2015 Dec 15;15:210.PMID: 26671340.