Table 2.
Representative and exemplary quotations
| Quote ID | Quote summaries and context | Exemplary quotations | Participant # |
|---|---|---|---|
| General understanding and perception of COVID-19-based restrictions to family presence | |||
| 1 | Father: RFP rules difficult to experience but understandable in context | You know, if I was to describe them as an individual, you know, one would think that they seemed tough. But, you know, when we look at the pandemic and some of the, I guess, horrible things that it has caused, I feel that it was definitely warranted for the situation that we were dealing with. So it obviously had its trying moments when he was in poorer condition. But it’s totally understandable | 7 |
| 2 | I was more concerned about his recovery than anything else | 5 | |
| Theme 1: Challenges to fulfilling the parent role | |||
| 3 | Mother has experienced past separation from one of her children, fears this from pandemic policies | That was my biggest fear in this pandemic was that if anything was to go wrong with either of my children, the thought of having to leave the other child is terrifying. And knowing that it’s a total real possibility because it happened to me is a real fear for me. And then even other parents knowing like one can get sick, and now you cannot access your other child is kind of cruel | 8 |
| 4 | Father disliked not knowing what was going on, worried about mother being alone for bad news | My partner hated it because he wants to know what’s going on as well. Knowing that if we ever got bad information, I’m now there all by myself with this kid…Yeah, it was really hard on him. Because any of that information I got, I was getting by myself. And now he was getting it second-hand from me | 8 |
| 5 | Mother who had to leave for sleep felt like she was abandoning her baby | It was just like the worst feeling ever having to leave [to sleep] because there’s no one else who can take your spot. You know, like in a normal scenario, my husband would have been there, or even my mom could have like tagged me off, or someone that I know and love and trust could have been there with her instead. But I just felt like I was abandoning my baby | 9 |
| 6 | Mother had to explain family presence policy to child | Yeah, we would just try to simplify it for [son] …. And so we would explain that because of the COVID virus and trying to not have it spread to too many people…or to a lot of people, they had to have rules to not have too many people in at a time… | 12 |
| 7 | Taking turns allowed meeting multiple family goals | My husband and I would take turns so I could come home and see my other children and take care of a couple of things here and there. Our son was never alone | 5 |
| 8 | Time for parent-to-parent handover supported family engagement in care | …they gave us enough time [during the switch out] to at least go through the notes that we’d made throughout our time with our son. You know, we were tracking how often he peed and bowel movements and temperatures, and things like that | 10 |
| 9 | Sibling restrictions added logistic burden, caused stress for family including sibling | …yeah, like we couldn’t bring her with us. And when we got to the point where we’re like, okay, now, we’re just going to keep her at a hotel close by just so we could go back and forth during the day. At least she could still see me and see my husband as well. Yeah, so it affected her a lot. She couldn’t sleep. She was crying a lot, looking for me, looking for my husband | 2 |
| 10 | Mother expressed regret at lost time with siblings and other family before death | … And [son] passed away that night…or I guess in the morning. He went to sleep, and didn’t wake up after that. So I just wish he would have had more time to see his brothers in person and not over Facetime or the window | 12 |
| Theme 2: Isolation from primary supports during a time of crisis | |||
| 11 | Mother’s separation from usual supports felt like being in jail | I’m a very fortunate person that I have an extremely supportive family and support system. And like outside of the hospital, people would never leave me like that. It just kind of felt like I was in jail or something, that no one was able to help me. [tearful] | 9 |
| 12 | Father alone in the room experienced emotional trauma from isolation while experiencing fear | And when you look at the PICU room, it’s quite … scary. Like she’s right in the middle of the room, machines all around her. And then the only thing you can look at is your daughter. And there’s no one to talk to, except when the nurses are exchanging shifts or they come in…. So to me, it was more of like psychological torture having no one to talk to, and then witnessing what my daughter was going through in that room | 3 |
| 13 | Father appreciated offers of support by social worker | There’s a social worker there. He stopped by a few times. And he was great as well. You know, offered me support and things like that. So yeah, definitely engaged and definitely awesome | 1 |
| 14 | Father wants hospital-provided supports without compromising medical care | … I don’t want to see doctors and nurses pulled away from attending to a child in a critical situation to deal with a parent who’s, you know, freaking out | 14 |
| 15 | Hospital design and family creativity used to enhance virtual presence | But those windows allowed [son] to be raised up in his bed and see his family out on the side of the road. Which we then live FaceTimed. And you have basically real-time that you can see them on the side of the road. So it was quite something, actually | 7 |
| 16 | Father notes mitigating impact of access to outdoors | …like it didn't even feel like we were really restricted. Because, you know, we couldn't have the parents, like family or whatever, but we were allowed to take a walk. Like there's a park like at the hospital, you know. So we were allowed outside the building | 13 |
| Theme 3: Navigating increased logistical difficulties | |||
| 17 | Mother described increased responsibility for communications | The only other thing I should highlight is like if there is only one parent there, how challenging it is for that one parent to explain the medical stuff to another parent, and like the importance of taking a moment for medical providers to be like, “Oh, is there anyone else you’d like to call before I give you this information?” Because a lot of times I felt it was up to me | 9 |
| 18 | Mother experienced difficulty navigating virtual relationships and communication |
P: We just had our Facetime on for the most part. And even that… Like I get it, we need to get consent from whoever was coming into the room, “Oh, we’re taking a video,” or, “Oh, we’re on Facetime,” just to inform them that they’ll be in the… Yeah I: And what was that experience like? P: It was hard. Like we could see your family crying over video. They want to be there. They want to see our son, and they couldn’t |
2 |
| 19 | Grandmother expressed difficulty accessing hygiene facilities | I didn’t have a room with a shower … So I’d have to make arrangements. I had to have one of the girls, … Home Life or something, they’d come in and sit with [grandson] and then I’d go take a shower … You had to be escorted out of that area because we were…locked down…. Sometimes …I’d ask in the morning, and it wouldn't be until 7:00, 8:00 at night … if I wanted to go shower | 6 |
| 20 | Mother experienced difficulty accessing appropriate nutrition | …I think it was down to one cafeteria. There were set hours. Life doesn’t always work that way.… But it was also like there weren't fridges that could store food. So it was not like I could bring stuff | 11 |
| 21 | Lower accessibility of sleep faciliites | So I was in an office chair, a raised office chair this past time. In a previous admission, and we’re going back to 2006, I think, there was like fold out couch or a recliner. So it was more apt so that you could sleep there, right | 11 |
| 22 | Parents experienced living out of their car in the parking lot | My husband and I had to take turns tag teaming. So I’d stay four hours with my son, you know, and then we’d switch, and then we’d be in the car | 10 |
| 23 | Financial stresses, exacerbated by pandemic, worsened the experience of restrictions | …it requires me to register one additional carer to stay with my daughter. By that time, it was my brother. So we were alternating. When my brother goes to work… I completely switched my schedule. I was working overnight, and my brother was working during the day…[normally] I could take time off. Unfortunately with some financial situations, I couldn’t. Because other things also need to move forward at the same time | 3 |
| Theme 4: Seeking compassionate approaches within the healthcare system | |||
| 24 | Although stressful, father expressed that the PICU staff were caring and helpful | So it’s very stressful, period. However, the entire PICU staff were absolutely incredible…I cannot thank these people enough for their dedication and their professionalism. They explained things to us very clearly. They answered our questions. They addressed our concerns | 14 |
| 25 | Mother expresses that the healthcare system seemed designed to enact barriers to families and discussion of the rules | [Hospital city]’s smart, they don't actually have any of their own doctors or nurses [tell you “no”]. They just send you on this through this bureaucratic stuff. So like our doctor doesn’t have any say into what’s going on. And you can’t even talk to anybody who does have a say. They kind of just send you through secretaries and people who there’s no point getting mad at somebody who makes minimum wage, yelling at them because they’re like, “Well, you can’t bring your kid, and you can’t bring a partner, and you can’t do this.” | 8 |
| 26 | Parent appreciated being forewarned of changes to rules | When they were changing the policy of two parents at bedside to one, one of the nurses that was taking care of my son, that they came to us and told us, “I don’t want you to be surprised. I know you’re going through a lot. And this is not official yet, but we are probably going to change from letting both of you into the PICU to just one….” And so by the time it arrived, we were not surprised and we were not upset because it caught us by surprise. But there were other changes that did | 4 |
| 27 | Parent expressed frustration at rules that did not make sense | …if you are saying if I can have my brother to come and stay with my daughter, my brother has his own bubble at work, he goes to totally different places, right. And I go to totally different places. But I can allow [sic]to go in, and he can also come to the hospital. So to me that somehow lacked sense | 3 |
| 28 | Mother experienced emotional distress from unexpected restriction in her mobility and access to services |
R: And they had the name of the patient and who is going to stay with the patient. And they will put like a red magnet, a marker, and then he will go in…. And then in the morning things change I: Right R: So I tried to go out, and I can’t. And I'm like, “But I’m telling you my name.” They’re like, “No, go back to your room and ask the nurse to request an escort.”… |
4 |
| 29 | Parent recommended that rules should be transparent, sensible, and family-centered | And then just having rules that make sense. So, for example, the changeout time for parents, like that should have been a) completely transparent because no one seemed to have an understanding of it. And b) it should be something that is actually designed around working for a family, and not just some obscure “I guess we’ll pick midnight because that’s the, you know, easiest calendar day that makes sense.” | 9 |
| 30 | Parent expressed need for consistent communication of rules | Like I’ve had like 40 or 50 different nurses. So everybody’s different, right. But you should have had one, I don’t know, like a worker sort of thing, to me. You know, you deal with her. Here’s her extension. You can ask questions. Or she comes in and goes through it with all of you | 6 |
| 31 | Mother experienced compassion from nurses, allowing presence with both children | And even the simple thing of just, okay, my husband and I are just making a switch just so I can spend time with my daughter. Like I had to leave my son upstairs, go downstairs because my daughter wasn’t allowed in. But, you know, there were… I don’t know if they’ll get in trouble for it, but there were very nice nurses who allowed us to do that switch. Because my daughter was a baby… | 12 |
| 32 | For mother, degree of nursing empathy enforcing restrictions impacted therapeutic relationship | It showed what kind of nurse they are. [laughs] Because then we could tell which one we could actually, you know, get support from emotionally…. Yeah, the majority of the nurses were … very empathetic. But at the same time, there were some who, you know, who just didn’t want to listen. They just said, “Oh, yes, that’s the hospital’s rule. We can’t do anything about it.” We’re like, “Okay, thanks for empathizing.” | 2 |
| 33 | Mother experienced exceptions to restrictions as rare | I don’t think I even asked because I didn’t want to hear the “no”. I don’t want them to have to say, “No, sorry, these are the rules.” Because that was for a specific palliative diagnosis | 12 |
| 34 | Father expressed importance of healthcare team having rule flexibility | …somebody’s mental health, if that suffering, you know, you’ve got to…that’s not easily weighed…it’s the people in the room that have got to make the decisions. So if they think it’s reasonable and it needs to be broken because somebody’s mental health is at risk, well, who else is to say? | 1 |
| 35 | Father experienced importance of rule flexibility when worried about child’s survival | You know, there was a point in time where, you know, with our son’s initial stay, he was in a very critical state that, you know, I am certain that, you know, there was four of us at one time visiting him because we didn’t…we weren’t quite sure that he was going to survive. So it was important for his siblings to be there, and to spend a little bit of time just in case things didn’t go in the right direction | 7 |
| 36 | Healthcare team members built relationships through securing rule exceptions | After we had been there for about three months, [daughter] ended up having like a third open heart surgery …And then the social worker and the child life worker, they somehow struck a deal with management for us to get to bring our older daughter in once a week for an hour. So we did… And it was like really, really special. So they did go above and beyond to make that happen | 9 |