TABLE 2.

Themes identified and illustrative quotations

Theme	Number (%) of respondents who mentioned theme	Illustrative quotations
Impact of prolonged hospitalization on siblings	63 (73.2%)	Q1. “Our room faced the parking lot and sometimes oftentimes with siblings you think, do they even love each other? Like you wonder, they fight and tease and bug. But then it was interesting. When they would leave, we could see across the parking lot and you could just see the sadness on all their faces. It was so hard. He would cry. We all cried and it was hard to watch them go. It was heartbreaking. And I couldn’t be there for my other kids because I was in the hospital with him.” Mother (inpatient)
		Q2. “So I was like I gotta spend some time with my other child, my son. I miss him, I know he misses me and us being away from each other for all that time, you know, is not good. So my grandmother had came up here and I had stayed all day and it was time where I needed to come home and she didn’t want me to leave. She hollered, screamed, kicked, everything. The nurses tried to calm her down. I talked to her on the phone on my way home and talked her down.” Mother (inpatient)
		Q3. “I felt pretty isolated ‘cause they wouldn’t let any of my family and friends come in more than two at a time and my visitors had to wear a mask. So I felt pretty alone ‘cause I felt like everyone was trying to just keep a bubble around me. And I think that’s when I really wanted to go home the most because I never was able to see barely anyone.” Adolescent (inpatient)
Parent anxiety	74 (86%)	Q4. “I would have much rather been in the hospital the whole time. I loved it. I loved it because it was stressless. It’s better than being home ‘cause when I was home I would always shiver-–I was so scared. But when I was there, I never shivered. When I was home I didn’t get any help and I couldn’t sleep ‘cause I was always watching her. That’s why I liked going to the hospital more. I could sleep in the hospital. And that was on a couch. I’d find that room to be like a castle. Like, I could get some rest. And when they said it was time to go home, I’d be happy a little ‘cause of my other kids but at the same time, from inside I’m not.” Mother (home management)
		Q5. “The first time I took him home during our 10 day break it scared me to death, because I was like, now I have to be the one monitoring him and making sure he doesn’t get sick...It kinda scared me...I was like ‘oh dear, ok.’ So, you have to flush the line, because if not it could get clots into his heart...But it really made me nervous at first because I was like, ok, I hope I’m pushing this in there right and making sure I did everything I could.” Mother (inpatient)
		Q6. “If I didn’t have any other kids, if it would just have been her I would have preferred to have been in a place where she was inpatient all the time. The people on the 17th floor were really like a family to us. When we left I was always kind of like, ’We’re leaving behind family.’ When we would leave, of course I would be ready to get the f*** out of there but, at the same time, you’re like, ’We’re leaving the people who are well-equipped to help her.’ So if she was my only child I would have preferred to have been at a facility that kept us the whole time because I feel like that anxiety at ANC of zero would not exist because I would have been surrounded by people who would have already been looking for the signs that we at home were looking for and could do something about it right away.” Mother (home management)
		Q7. “Mother: Going to the hospital, as long as she knew she would eventually come home, going to the hospital was like an extension of the family. It was doctors and nurses that knew what she was going through. She didn’t have to explain anything. She could be herself and they knew that–-they knew everything she was going through. So she knew she had to go to the hospital, but it could’ve been worse. She was going to be with people who generally cared about her, loved her.
		Child: I had doctors that picked out nail polish for me, the nurses would joke around with me, color with me.
		Mother: She knew that when she went to the hospital, she wasn’t so isolated, even though sometimes she was on isolation.”
		13-Year-old and mother (home management)
Quality of child’s sleep	56 (65.1%)	Q8. “Okay, the biggest difference between staying at the hospital and staying at home-–you actually get sleep at home. Like at the hospital it’s once every four hours they come in and they check all your vitals and stuff so you’re waking up for that. I mean, it’s just really like, they bug the crap out of you. The nurses they’re coming in all the time and like the lights in the hallway never go off. I think I got better faster at home when I could sleep.” 17-Year-old (home management)
		Q9. “The hospital beds, I didn’t like ‘em at all. They didn’t feel right to me. When I would wake up I would sit in a chair. I wasn’t in the bed at all during the day unless I was taking a nap...If I could get comfortable in the bed I slept well, it was just that getting to the point where I could actually sleep, I guess, was hard.” 15-Year-old (inpatient)
		Q10. “And then towards the nighttime, that’s when I would try to stay awake because doctors don’t really want to wake you up when you’re sleeping. So I would sleep during the day to kind of try to avoid them. And then during the night I’d stay up as late as 5:00 in the morning because it was so quiet.” 12-Year-old (inpatient)