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Table 2 Themes, Subthemes, and Exemplar Quotes

From: Parents’ pandemic NICU experience in the United States: a qualitative study

Theme 1: Parents’ NICU experiences during the COVID-19 pandemic were isolating and overwhelming
Subtheme: Isolation and disconnection
“My child almost did not make it and It was hard because I was the only one aloud in the NICU and I was alone to cry and didn’t have the emotional support.” (White mother of twins from Maine)
“My wife and I had to lean on each other instead of leaning on family and friends. We not only had a son, but we also lost one, so it was an emotional roller coaster.” (White mother of twins from California)
“We never imagined not having our families and closest friends be with us during this amazing time in our lives.” (White mother of 1 from New Jersey)
“Both my husband and I were unable to visit our baby at the same time, and no other visitors were allowed. Doing this alone was tough and took a huge toll on my mental state.” (Black mother of 4 from Pennsylvania)
“Being the only one who could visit my daughter was incredibly difficult and taxing. My husband and I very much intend to share parenting roles, but it was not possible for him to participate in person at all while she was in the NICU. We definitely understand the precaution, but it was so taxing on both me and him.” (White Mother of 1 From North Carolina)
Subtheme: Distress and trauma
“This was my 2nd child to be in the NICU. My first child was there in 2017. While that was stressful, the added impact of COVID made this time much lonelier.” (White mother of 2 from Texas)
“[Our son] died unexpectedly with no real warning before his crisis. Due to covid we have very few pictures of him without a mask over our faces and none with his older sister. The NICU isn’t easy in the best of times but when a child dies in the middle of the pandemic you can’t have the normal support of friends and family due to isolating to stay safe for your remaining child.” (White mother of 3 from Colorado)
“It was extremely challenging. Our son being born prematurely was already a traumatic experience and now we were not allowed to be together to visit him in the NICU.” (Father of 1 from California, unknown race/ethnicity)
“Hospital policies not in touch with lives reality of families making the impossible pain of baby in NICU even more impossible.” (White mother of 1 from Washington)
“It is hard to discern which emotions are related to losing our other son vs. the NICU stay vs. COVID -- so, I will just comment that it could be a combo of the above impacting my responses. It has been hard to mourn our son [twin A] we lost in the midst of a pandemic and taking care of a preemie [twin B].” (White mother of preterm twins from California)
“It has been extra stressful because of COVID 19. The isolation is difficult especially [with] post-partum depression and OCD.” (White mother of 2 from Kansas)
Subtheme: Intense emotional expressions
“It’s scary coming and going home.” (White mother of 5 From Texas)
“It was harder to feel like I was safe to love on my baby.” (White mother of 3 from Wisconsin)
“We were terrified they were going to say we couldn’t visit at some point.” (Mother of 3 from Iowa, unknown race/ethnicity)
“I had to deal with my anxiety, panic attacks, and talking with all the doctors and nurses completely alone and my husband couldn’t see his son for 5 weeks.” (Mother of 2 from Tennessee, unknown race/ethnicity)
“We were sent home quickly after I [delivered], our baby stayed, and it broke my heart daily to leave him.”
(White mother of 3 from Texas)
“Everything is much scarier. I needed more family support, and I didn’t get that [because] me and dad were not allowed in the NICU together and that made me feel so alone. I want to share experiences with him and I couldn’t.
(White mother of 2 from Kansas)
“Only one parent was [able to] speak in person with all doctors, nurses, support teams, which then put so much on my shoulders. I was sad and trying to keep myself together. There were times I would forget what I wanted to ask or the information became so overwhelming, then having to come home and repeat all of this to dad was heartbreaking all over again.” (Hispanic mother of 3 from New York)
Theme 2: Disruption to the family and family-centered care
Subtheme: Parents’ essential caregiver role
“The hospital as an institution put in place policies meant for the greater good, and yet seemingly not taking into account something that nurses and doctors have long practiced and preached: that family support of a baby in the neonatal intensive care unit is, in fact, essential.” (White mother of 3 from Texas)
“He should he considered an essential caregiver and not a visitor. It’s been incredibly hard to handle everything on my own and cruel.” (Mother of 2 from Tennessee, unknown race/ethnicity)
“Parents are not and should NOT be considered visitors. We are essential for the baby’s health and all of us need to be together as a family. Separating us in our already fragile state was incredibly stressful. We also need to be present to advocate for our baby. Moms and babies should be considered one unit, and Moms do need their partners for support.” (Asian mother of 1 from Michigan)
“When only one parent was allowed, my son was very unstable, and we had to go through hearing some hard news without the support of our partner.” (Hispanic motherof 1 from New Mexico)
“Since only one parent was allowed to visit at a time and we lived an hour and half away, my husband only got to visit our baby in the NICU 3 times in the 4 weeks he was there. He also didn’t get to meet or visit with any of the doctors, specialist or surgeons that our son was in the care of or hear anything firsthand about his diagnosis or treatment.”
(Mother of 5 from Texas, unknown race/ethnicity)
“Parents are being forced to be apart, spouses are missing weeks and weeks of their newborns lives, all while the child is exposed to numerous doctors, nurses, specialists, therapists, etc. This nonsensical policy [one parent at a time] has resulted in so much trauma and heartache.” (Mother of 1 from Michigan, unknown race/ethnicity)
Subtheme: Egregious loss
Loss of bonding
“Bonding with our newborn as parents was a joke. My husband and I couldn’t be with our daughter at the same time. Many firsts were missed by one or the other.” (Mixed-race mother of 1 from Utah)
“My husband and I would switch out every 12 h. This meant we didn’t spend any time with each other at home because we wanted someone to be with our daughter at all times…. It ruined our relationship because we could not be together seeing our baby.” (Asian mother of 1 from Texas)
“Other parent had to wait until baby was discharged to meet the baby. Siblings were not able to meet the baby and bond. It became harder for siblings to understand what was happening.” (Hispanic mother of 3 from New York)
Loss of experiences
“Unfortunately, with no warning signs, my son died. Due to covid no one other than his father and I got to meet him for his 30 days of life. His older sister and grandparents only got to see pictures or videos. It was hard to leave the NICU since those were the only people who knew him … We have very few pictures of him without a mask over our faces and none with his older sister.” (White mother of 3 from Colorado)
“I want to exclusively breastfeed and once my baby starts oral feeds only, he will have to take a bottle for most of his feeds because I cannot be there due to limited visiting hours. I am actually pretty upset about this, as I am worried, he will prefer the bottle over my breast.” (White mother of 1 from Michigan)
“Only my husband and I are allowed and never at the same time, so no one else has visited our baby. We must always wear masks, so my baby can’t see our faces or hear our voices well. I can’t be in the same room as my husband and child at the same time. I can’t kiss my baby.” (Mixed-race mother of 2 from Georgia)
“With face masks required by all we are worried our daughter will not know facial expressions and emotion.”
(White mother of 1 from Florida)
“We’re required to wear masks the entire time so I dislike how my child cannot see me smile or receive a kiss.”
(White mother of 1 from Texas)
“I get a disconnect with my daughter having to wear a mask every time I was able to visit with her.”
(White father of 2 from North Carolina)
Loss of time
“Only I was allowed to see my baby for the first month. No family and not even baby’s dad was allowed in unless I was going to stay away for 24 h.” (White mother of 3 from Wisconsin)
“We had to visit separate from each other, meaning our first time completely together as a family was 18 days later when our son came home.” (White mother of 1 from Georgia)
“If my husband lives with me and I’m allowed in the NICU then he should be too … I can’t drive myself, so my husband drives me every day and he sits in the parking lot for the hours that I’m there.” (Mother of 2 from Tennessee, unknown race/ethnicity)
“My husband and I could not visit our son in NICU at the same time. Having just given birth, I was not able to drive so my husband would drive me to the hospital while I visited, nursed, and pumped, while he had to wait in the car and then I would wait in the car while he came in.” (White mother of 1 from North Carolina)
“We live together, eat together – in fact my husband was dropping me and picking me up from the hospital, so we are already exposed to each other, how does this reduce the risk?” (Asian mother of 1 from Michigan)
Theme 3: Interactions with NICU providers intensified or alleviated emotional distress
Subtheme: Support and validation
“We understood the precautionary steps the NICU was taking, but maybe being a little more sensitive to what the parents are going through during those times may have helped.” (Father of 1 from California, unknown race/ethnicity)
“The doctors could have been more sympathetic. The nurses could have been more supportive of our time with our child. They often do care time before or after his time, despite us coming specifically to help. They also sometimes discourage us holding him to let him rest. Because we already spend so little time with him, I feel sacrificing a bit of sleep would be worth it for the benefits he would experience being close to us.” (Mixed-race Mother of 2 from Georgia)
“I felt as though no one understood the real trauma and pain I was dealing with having 2 infants in the NICU during uncertain times. I really struggled with leaving my babies and have never had NICU babies before my twins. I was struggling emotionally and mentally and didn’t feel like the doctors cared. I also felt like hospital policies were so strict they were causing unnecessary mental health issues on new parents with NICU babies. I am now in EMDR therapy to try to help process the loss and grief of our NICU stay & birth experience/trauma.” (White mother of 4 from Washington)
Subtheme: Alienation and inclusion
“They started doing their rounds via FaceTime. We mostly saw the nurses and nurse practitioners. We continuously told them we wanted a primary care team for our daughter, but they did not do that, mostly because they would continue switching out staff, so one person could not stay with her for too many days due to COVID.” (Asian mother of 1 from Texas)
“Changing protocols 2–3 times a day. Staff was advised to have only minimum contact with all patients (i.e., no lactation support, undiagnosed and untreated postpartum depression etc.).” (Hispanic mother of 1 from Ohio)
“The biggest thing that bothers me is that the rotation of staff who work with our daughter is very random. She’s been here 27 days and has had more than 27 different nurses working with her. I hate this for many reasons, the first is that the more people she comes into contact with the higher her exposure risk. The other biggest reason is that I want someone invested in her care, someone who has gotten to know her like I have.” (White mother of 2 from California)
We learned a lot about caring for our child and have used the skills at home with him. The doctors always took time to visit us daily, but sometimes it is hard to know what you do not know -- or what to ask? (White mother of twins from California)
I’m not sure [what staff could do differently], unless the doctors could have more strongly advocated with the hospital for parental presence. They would say things like ‘do skin to skin is very helpful x number of times a day’ or ‘breastfeed x number of times a day’ seemingly without taking into account there were actually hospital policies making that very difficult or without following through in any helpful way to facilitate that.” (White mother of 3 from Texas)
Subtheme: Professionalism and consistency
“It was interesting to see the changing protocols, almost daily, as the hospital navigated the safest screening parameters for the both the maternity levels of the hospital and the NICU. I feel like the care we received was not impacted, everyone was incredibly professional.” (White mother of twins from California)
“Some nurses wouldn’t wear a mask and face shield together (which was required) every time they came in the room which bothered me. Many touched their masks and touched my infant. Many pulled down their masks when they needed to catch their breath instead of walking out of the room, but I didn’t feel like I could speak up about it.”
(White mother of 2 from Colorado)
“Lack of information, changing protocols, general paranoia amongst nurses did not support confidence in the team to the point we did not dare to leave NICU fearing not being allowed to enter again.” (Hispanic mother of 1 from Ohio)
“It was unnerving to be in the same hallway as covid babies. I did not like when I would see my nurse have to gown for one patient and then come into our room. It was also difficult to hear staff talk about going out on weekends while we were quarantined as much as possible to keep our baby safe.” (White mother of 1 from Florida)