Family Presence in the NICU

Constraints and Opportunities in the COVID-19 Era

Janelle Bainter; Marybeth Fry; Brenda Miller; Teesha Miller; Amy Nyberg; Alexa O'Dell; Ginny Shaffer; Lelis Vernon

Disclosures

Pediatr Nurs. 2020;46(5):256-259. 

In This Article

Survey

The VON Family Faculty team recently conducted an informal survey of members of the VON email list, which includes Family Partners and clinicians, to better understand how they coped with decisions restricting family access to NICUs during the pandemic. Respondents were asked to reflect on the degree to which their centers were inclusive of families in several roles: at the bedside in the care of their babies, as members of quality improvement teams, and as participants in decision-making processes, both prior to and during the COVID-19 outbreak. Additionally, two open-ended questions were used to understand the greatest challenges faced during the COVID crisis. Current families at the bedside were also asked for their informal, qualitative real-time perspectives.

Total number of participants was 47 (19 family partners and 28 clinicians). Here is a sample of select responses from the survey and from families, demonstrating the impact of COVID-19 policies in NICUs.

Recent restrictions on in-person participation at the bedside and reinstated 'visiting hours' have been the most abrupt culture change due to COVID-19, overriding family preferences and peer support among other aspects of family-centered care.

The experience of having your child early is one of the most difficult experiences, I believe, a parent can go through. Add on top of this the inability to be able to support your wife and newborn child amidst the chaos and uncertainty of a pandemic is something I would not wish upon anyone. — Dad at the bedside
I have lost connection with most current families [in the NICU] – remote educational and support offerings from a stranger are not easy to take advantage of. — Family Partner
I have witnessed the challenge this pandemic has been [for] our Family Partners. They have been creative in supporting families online and do their best to meet with families while wearing masks, but [with this way of working it] has been hard to connect emotionally. — Clinician

Family Partners and clinicians surveyed felt that a major concern was the lack of meaningful, consistent communication with families, in relation to baby care, as well as in relation to policy changes in the COVID-19 environment.

Not knowing how this virus could affect our daughter was one of the hardest parts. Stories began to come out which spoke of asymptomatic carriers infecting others without even knowing it was going to happen. This caused us to begin looking at everyone and wondering where they had been, who they came in contact with, and how careful they were being to keep themselves safe. — Mom at the bedside
Hospitals need to use technology in safe ways to communicate with families and help families communicate with one another. There has been no written communication with families since this began – it's all word of mouth from the entire children's hospital. Rounding should include phone calls or online meetings with families so that both parents can hear. — Family Partner
Frequently changing standards and practices related to parent presence, PPE, social distancing … are among [the] greatest challenges to families. — Clinician

Other chief concerns expressed in the survey were the restriction of family access to the NICU and participation in daily care, and decreased overall family support.

[Describing the impact of increased separation from her older child and husband:] This feeling of hopelessness was compounded by intense hormonal swings my body was going through postpartum. For someone who has never struggled with depression, I was, for the first time, distraught and crying uncontrollably for days, until I elected to take medication to help me cope. — Mom at the bedside
Our families do not have access to their support systems, it is very hard to witness and to coach them through, as I generally encourage them to have as much support present as possible. Having grandma, aunts, siblings, etc. not be able to really see the baby puts the parents at a real disadvantage. No one on the outside [of the NICU] truly understands what the baby is going through. FaceTime is not at all the same. Also, parents are terrified that they will be the ones who bring germs in and get their babies sick. So some make the difficult choice to not come in. That is so hard to see as well. — Family Partner
I think the hardest thing for families to deal with is juggling everything… and having to be alone in the NICU without their support person. — Clinician

Both Family Partners and clinicians shared a concern about the lack of family representation in policy and decision-making processes.

The struggle comes from Family Partners not being involved at the hospital/system level. Maybe we are working in the NICU, but the NICU isn't making the decisions impacting our families. — Family Partner
Family Partners are an integral part of our team. We have had to restrict the number of people at the bedside during this pandemic, but I see them continuing to be as integrated in our team again in the future. — Clinician

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