Introduction: Why are we talking about presence?

PRESENCE Study Summary

Aim

We brought together a diverse team of families, multidisciplinary neonatal healthcare professionals, researchers, and decision makers to investigate the impact of parent-infant separation on neonatal health outcomes and parent well-being and mental health, and to create consensus recommendations regarding parental presence.

Methods

To accomplish our goal, we collected information from parents, healthcare professionals, and leaders regarding the impact of parent restrictions across Canadian NICUs via online surveys. Using this data and existing evidence, we identified a list of 50 items of interest related to parent restrictions.

Two rounds of Delphi surveys were circulated to Canadian parents of an infant requiring a NICU admission during the pandemic, neonatal healthcare professionals, and decision makers to rank and prioritize the top list of items.

A diverse consensus group consisting of 25 individuals with expertise related to the project through lived experience, career, education, health policy, community engagement, and public health decision-making was created. This group reviewed rapid synthesis evidence-based summaries of known benefits and potential harms related to parental presence and involvement on infant and parent outcomes. Thirteen priority recommendations were
identified.

Recommendations for each item were either ‘strong’ or ‘conditional’ based upon the certainty of evidence for the outcomes.

• Strong: the consensus panel was confident that the desirable effects of adherence to a recommendation outweighed the undesirable effects and that given the certainty of the evidence and consistency of values and preference, it would be unlikely that the recommendation would change with new evidence.
• Conditional: there was a small margin between favorable and unfavorable outcomes, and the consensus panel concluded that the desirable effects of adherence to the recommendation probably outweighed the undesirable effects or the evidence was of lower quality, there was greater variability in individual values and preferences, and there was a possibility that the recommendation may change with new evidence.

Conclusions

Consensus recommendations included six strong recommendations and seven conditional recommendations. The strong recommendations are parents as essential caregivers, providing skin-to-skin contact, direct or mother’s own expressed milk feeding, attending medical rounds, mental health and psychosocial services access, and inclusion of parent partners in pandemic response planning. The conditional recommendations are providing hands-on care tasks, providing touch, two parents present at the same time, food and drink access, use of communication devices, and in-person access to medical rounds and mental health and psychosocial services. 

Significance

Variations of parental presence restrictions remain in effect around the world. Implementation of consensus recommendations are essential to support the health and well-being of infants and their parents, actively prepare for future infection control crises, and ensure equitable promotion and maintenance of consistent parent presence NICU policies, resources, and advocacy.