Over the past two-plus years, the COVID-19 pandemic has upended how healthcare is delivered in hospitals and outpatient facilities. The neonatal intensive care unit (NICU) is certainly no exception. Since the onset of the pandemic, the NICU experience for parents, families, and our smallest, most vulnerable patients have been negatively impacted by COVID-19 and the resulting restrictions imposed on the unit. Although the world is still grappling with the challenges of COVID-19, hospitals today have more knowledge, tools, and experience dealing with the virus, so planning to improve the overall NICU experience in this “new normal” can – and should – begin now.
We Already Know That Family Presence at the NICU Bedside is Crucial
With family-centered developmental care (FCDC), family members are recognized as vital members of the NICU healthcare team from day one. It has been well-documented that having family members present at the NICU bedside can benefit both patients and parents by elevating the bonding experience (for example, through skin-to-skin contact), bolstering the infant’s development, and ultimately ensuring better preparation for long-term care and discharge. In addition, integrating families into the decision-making processes and engaging them as collaborators in their baby’s care leads to long-lasting positive effects on all babies’ physical, cognitive, and psychosocial development, including those in the NICU.
In early 2020, as COVID-19 case counts increased, hospitals were forced to swiftly restrict families’ NICU access, in many instances scaling back family access to a single parent at a time. Parents should not be viewed as “visitors” when their children are hospitalized. Their presence is vital and should be unquestioned. Restricting parental access to their hospitalized child is actually the antithesis of family-centered care and many best practices related to neonate development and outcomes in the NICU. Such restrictions could put newborns at risk for several adverse effects, such as, less weight gain, increased length of NICU stay, and long-term defects in cognitive, emotional, and social development. While common sense dictates that improved communication, physical relief and respite, and family presence should be prioritized in times of struggle, families were often forced to separate, causing emotional and physical strain. The scaffolding that holds parents up during an emotional NICU experience was dismantled at the onset of the pandemic, and the impact of this is only beginning to be realized.
Identifying the Core Separation Challenges Presented by The Pandemic
COVID’s arrival in the US presented numerous obstacles that altered how care has traditionally been delivered in a NICU environment. First and foremost was the issue of how to best support the safe care and development of patients. In the early wave of the pandemic, family access to the unit was restricted or even prohibited in many instances, significantly impacting a family’s ability to bond with their baby, communicate with the care team, and have a hands-on role to learn how to care for their baby and prepare for hospital discharge. In these scenarios, evidence-based approaches to neonatal care, including frequent skin-to-skin time, consistent breastfeeding (if possible), and ensuring a continual parental presence in the hospital, were limited at best.
Additionally, the challenge of ensuring parents and families remain supported and engaged in their child’s care during their hospital stay became more complex than ever before. New restrictions on the unit often resulted in less care team engagement and communication with the family. During this time, many hospitals eliminated most extended family visitation, which can often serve as vital emotional and physical support for the parents who have been continually at the bedside. As a result, many parents reported feeling drained and depleted during the NICU experience, which could hinder their ability to be the best version of themselves as a partner in their child’s care.
As a result, hospitals were motivated to find new, innovative ways to better incorporate families into the care of their child at a frequency that was on par with pre-pandemic levels.
Leveraging Pandemic Learnings to Improve How We Approach NICU Family-Centered Care in the Future
As severe COVID-19 cases decline globally and society adjusts to the new normal, we are optimistic that the worst of the pandemic is behind us. While it’s reasonable to expect that there will be surges in the spread of the virus and that new variants may enter the mix, hospitals should take this opportunity to partner with their NICU patients’ families. Together, NICU staff and leadership, and families should reflect on and draw from the past 24 months of care delivery experiences and identify the best preparation practices for improving the overall NICU experience of the future.
As a former NICU mother, a parent of a child with chronic and sometimes acute medical issues, and a family care advocate, I feel strongly that there is a lot to be learned from our shared pandemic experiences, and this knowledge can be applied as we strive to reinstate and improve infant and family-centered care moving forward. This includes hospitals taking a multi-pronged approach to planning for the future, drawing from the experiences and inputs of their NICU families, to help ensure that from now on, parents are physically and emotionally supported and equipped to be the best possible partner on their child’s care team.
Moving Forward: Taking a Closer Look at the Necessity of Visitation Restrictions
First and foremost, it should be acknowledged that parents are not “visitors” when their children are hospital patients. Parents should be regarded and engaged as essential members of the care team. Restricting parental access to patients – by applying “visitation restrictions” – has serious impacts on the child’s health, the preparation of the family for discharge, and the emotional well-being of the patient and families.
As these restrictions are lifted in many hospitals, healthcare organizations should carefully evaluate the actual upside (if any) that COVID-induced restrictions generated for the NICU. This should be evaluated against the feedback of parents, caregivers, NICU nurses and physicians. Neonatal practitioners generally understand that family presence in the unit positively impacts a patient’s physical, cognitive, and psychosocial development. If reduced bedside presence in the NICU is deemed necessary (only one parent allowed on-site at a time, no siblings or extended family allowed at all, etc.), additional emotional support services should be provided to families, as well as extra attention to discharge readiness and planning. Lastly, as the rest of the world has embraced gathering virtually, hospitals should evaluate next-generation family engagement technology solutions, like camera systems and other real-time communication tools, to build and maintain meaningful connections with extended family throughout the patient’s stay.
Harnessing the Power of Innovative Technologies to Elevate Family/Care Team Communication
Ensuring consistent and frequent level of communication with families has been a high priority for many NICUs over the past few years. This focus was especially true when the ability to have face-to-face conversations with a child’s clinical support team was scaled back, which only added a layer of stress for NICU families already carrying the burden of serving as a child’s clinical advocate during a pandemic. Healthcare leaders should continue to embrace advanced digital solutions that allow for real-time communication between families and care teams, especially when a physical bedside presence is not possible.
Elevating How Education and Support are Delivered
For a new parent navigating the NICU journey unexpectedly, knowledge is everything. During the pandemic, healthcare organizations had to find new approaches to disseminating educational information remotely. Many solutions utilized should still prove successful even as in-person round-the-clock access resumes. Remote education leverages technology like apps and portals (instead of brochures and on-site videos) to push out materials and track engagement. Adopting a digital approach to educational resource distribution also presents an opportunity to offer the curriculum in multiple languages, allows for ongoing updates to resources as needed, and provides more flexibility for how and when families use the tools.
Lastly, support for NICU families should routinely include conversations about mental health needs and awareness. Even pre-Covid, having a child in the NICU has always been a traumatic experience on some level. Having a child in the hospital during a pandemic can be even more isolating. Hospitals should rally around enhanced efforts to normalize conversations about mental health to support NICU families who may be struggling and connect them with the growing number of clinical resources that are now available.
Putting Families Squarely in the Center of Care Team Collaboration in the NICU of the Future
COVID-19 has taken its toll on health systems globally. It exposed some stress-points, and also resulted in new and innovative ways to keep collaboration flowing during times of uncertainty. Now we have an opportunity to improve how modern healthcare organizations approach care delivery, during extreme conditions in the future. Planning for the future must be done collaboratively, with all stakeholders – including hospital leadership, multi-disciplinary NICU teams, and, of course, parents and families. Listen to family stories, invite parents to join your NICU committees, and ask for honest opinions on what types of solutions would be most effective for families in the unit in the future. What worked during the hospital lockdowns in terms of communications and innovation, and what was less than successful? What were the most significant stressors for families when their child was hospitalized during the pandemic? Were there new technologies that parents were excited about, and where did they need additional levels of support and education? And be certain to incorporate their viewpoints when evaluating future restrictions of family presence at the bedside.
As with many aspects of life, we will not simply revert back to “pre-pandemic” but instead find a “new normal.” For hospitals and NICUs, now is the time to be proactive about creating that new normal. Most importantly, have a plan – or better yet, have a planning team that not only includes parents and families but one that genuinely values their perspectives on how best to reinstate and improve infant and family-centered care in the NICU in a post-COVID world.
Annie O'Connor has been an advocate for patient and family engagement in health care for over 15 years. She helped build the Family Advisory Council at Morgan Stanley Children's Hospital and served as Chair for 12 years. She was the first patient/family member invited onto the Quality and Patient Safety Council and has served on numerous other committees. Annie's passion is fueled by her hospital experiences with her youngest son, a NICU graduate who has undergone multiple surgeries and hospitalizations. Annie has presented her work at several national conferences. She currently sits on the AngelEye Health clinical advisory board.