Practice developments supporting change implementation in Wellington,New Zealand (NZ) for ‘continuity of care when transitioning complex preterm infants from NICU to home’

The discussion paper will focus on continuity of care relating to previous NZ research, specifically to transitioning complex preterm infants from NICU to home based on parent experiences, and on the practice developments that have occurred, to ensure optimal health outcomes. Previous NZ research discovered parent desire a consistent service delivery for the entire transition journey from NICU and at home.An informative and comprehensive opportunity has occurred for reflective professional practice, evaluation, development and implementation which have transpired in positive change through innovative practice developments and support change implementation in Wellington, NZ. This has resulted in the articulation of a model of care that has both embraced and integrated parental desires for a continuity of care process for complex preterm infants. This has been achieved by having the same Discharge Facilitator/Key Case Manager present within the NICU and external to the NICU for Home-based infants for the entire transition journey.The paper will focus and emphasis additional practice development changes and furthermore, will present a real purpose, for other countries to learn of such practice developments that have exemplified a celebratory success for families of Wellington, NZ.     

Overview of the neonatal research network: History,contributions, challenges,and future

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) Neonatal Research Network (NRN) has been a leader in neonatal research since 1986. In this chapter we review its history and achievements in (1) continuing observation of populations, treatments, short and longer-term outcomes, and trends over time; (2) “negative studies” (trials with non-significant primary outcomes) and trials stopped for futility or adverse events, which have influenced practice and subsequent trial design; and, (3) landmark trials that have changed neonatal care. Its consistent framework has enabled the NRN to be a pioneer in conducting longer-term, school-age follow-up. Leveraging its established infrastructure, the NRN has also partnered with other NIH institutes, governmental agencies, and industry to more effectively advance neonatal care. As current examples of its evolution with changing times, the Network has instituted a process to open specific network trials to external institutions and is adding a parent and participant component to future endeavors.     

Addressing bias and disparities in periviable counseling and care

Addressing bias and disparities in counseling and care requires that we contend with dehumanizing attitudes, stereotypes, and beliefs that our society and profession holds towards people of color, broadly, and Black birthing people in particular. It also necessitates an accounting of the historically informed, racist ideologies that shape present-day implicit biases. These biases operate in a distinctly complex and damaging manner in the context of end-of-life care, which centers around questions related to human pain, suffering, and value. Therefore, this paper aims to trace biases and disparities that operate in periviable care, where end-of-life decisions are made at the very beginning of life. We start from a historical context to situate racist ideologies into present day stereotypes and tropes that dehumanize and disadvantage Black birthing people and Black neonates in perinatal care. Here, we review the literature, address historical incidents and consider their impact on our ability to deliver patient-centered periviable care.