Missed Caregiving: A Call to Action for Health System Leadership.

Abstract

Five years ago, we wrote an editorial about the goals of individualized developmental care and the implementation challenges neonatal intensive care units (NICUs) face even when established care guidelines exist, in light of the fact that the evidence for many interventions were still lacking.1 Existing barriers included healthcare system structures that did not support delivery of developmentally focused care. For example, despite the knowledge that high noise levels are stressful for both infants and parents, many alarm systems do not inform caregivers without also creating significant noise. Since that first editorial, significant empirical evidence highlights the value of integrated family-centered developmental care interventions for both high-risk infants and their familes2–4; yet, NICUs continue to struggle to fully implement this important care. For example, evidence of the importance of zero separation of infants from their families now exists.2,4 Currently, the lack of full implementation of integrated family-centered developmental care is frequently blamed on the COVID-19 pandemic.5–8 At the height of the pandemic, parent access to the NICU was significantly limited. Yet, even today parental presence in the NICU is limited by nursery policies, COVID-19 quarantine protocols, and structural determinants such as lack of access to affordable transportation. Parents may need to care for other children who are not able to attend school or day care because of COVID-19 exposures or illness. Even when parent presence in the NICU is unhindered by COVID-19, they may not be able to afford to be with their infant as frequently or as long as they would prefer because of their job requirements or transportation costs. In addition, the COVID-19 pandemic has led to nurse burnout, stress, and staff shortages.9,10 Short-staffed NICUs create morale distress for nurses who cannot deliver the high quality of care they know the infants and families deserve.11 Regardless, even when parents are present in the nursery, staff may not have the time to support parents' informational, emotional, and physical needs. The term “missed care” is often used to refer to care that is not, but should be, delivered. Missed care in the NICU often includes the provision of integrated family-centered care and was present prior to the pandemic12 and is related to nurse job enjoyment and their plans to leave the NICU.13 To ensure nurses can deliver the care they know is essential for the infants and families, hospital health systems must support workload assessment that includes these important aspects of caregiving.14 Every neonatal nurse knows that it takes more time to teach and support a parent to provide caregiving to perform that caregiving themselves. Yet, parental presence and participation in the health care decision making and delivery of care are essential to parental confidence in their caregiving and decreasing infant hospital stay. Parents must be acknowledged as an important aspect of the caregiving team, potentially the most important aspect, given their long-term impact on the growth and development of the infant. Over the past 2 years, we have all seen the power of the voice of nurses. It is now time to raise our voices for ourselves and the infants and families we serve. We must advocate at the national level for standardized staffing levels that allow for the appropriated delivery of care and polices that ensure that parental presence is not compromised on the basis of racial and structural determinants of health. While zero separation may seem like an unreasonable and unobtainable goal, if we don't have such a goal we will not begin to move the needle toward a more optimal setting that supports the growth and development of infants and their families. Therefore, given the importance of the provision of integrated family-centered care, nurses must be afforded the time to ensure they can have effective interactions with families, deliver developmental interventions and parent teaching, and maintain ongoing relationships with families over the course of the hospital stay. —Debra Brandon, PhD, RN, CCNS, FAAN Co-Editor; Advances in Neonatal Care [email protected] —Jacqueline M. McGrath, PhD, RN, FNAP, FAAN Co-Editor; Advances in Neonatal Care [email protected]