Table 3.

Themes and Illustrative Quotes Describing Caregivers’ Experiences while their Child Awaited Inpatient Psychiatric Treatment

Theme	Selected Quotes
Positive Hospital and Provider Experiences	“Surprisingly, having him here in the hospital’s been a lot easier than having him at home because of the fact that the nurses are helping with so much of the other stuff. It’s been a lot easier than when he’s at home… I’m not telling him no, the nurses are. So I don’t have to be the bad guy. I get to be the good guy. When I’m at home, I’m the bad guy, and that’s why he’s fighting with me.” (Caregiver 6) “Well the staff’s been very helpful. The social workers have been calling – they’ve called us multiple times to let us know what’s going on with the searching for a bed and other things. Child Life has come in three or four times saying ‘Hey, there’s stuff going on in the playroom. Do you wanna come join us?’ He’s gotten movies from them.” (Caregiver 2) “We’ve called the nurses. They’ve been there within minutes. I mean, all of my questions were answered. And then when they had to get back to me, they got back to me.” (Caregiver 10)
Frustration with medical and mental health care systems	“There’s no in-between help. It’s like she’s just sitting there until we find an inpatient [bed]. So that means she’s not getting any therapy that she needs because they don’t have – I understand they don’t have an inpatient facility, but what about having a therapist to at least get the ball rolling so when she does get transferred out, they can say hey, this is what I gather so far. Here you go. But it’s just basically hey. They come in, check her vitals, say we’re going to do this test, do that test, but no one’s talking to her to really start the process.” (Caregiver 4) “My child has [multiple diagnoses]. So, we were here twice before and tried to do a partial program, which didn’t work for him at all. So, we ended up back in the ER Tuesday. And he was evaluated and then referred for inpatient and we’ve been here waiting, since.” (Caregiver 5)
Information needs	“Yeah, I mean, there was no brochures about the programs. There was no one-pager that said, here’s a list of programs. It was, I’m in a moment standing in the hall totally freaked out, and someone rattles off four names of programs to me.” (Caregiver 5) “Do they put him in a car or a cab or an ambulance and put him in a straightjacket and drive him there? And even when he goes, if they take him, can I go with him and travel along with him, or do I have to find my own way to get there?…I just wish I knew now how that was gonna work because I think that’s kinda scary not knowing.” (Caregiver 6)
Fears about inpatient psychiatric units	“I started reading [online reviews] about it, and I read some really horrible things. And so, I’m just like, I don’t know. And I don’t want him to go in and come out worse than he is already. Because some of the stuff that I’m reading, it was just like, there were stories on there that their kids were – they went in and they’re kids were black-and-blue, bruised up, black eye, bruises on their backs, and there were bugs in their food. And I’m like, I don’t want – yeah, you think I’m gonna send my kid there. Would you send your kid there? And I’m like – and this is just like – and it was crazy because it was three different people that put the same thing as a post for their reviews.” (Caregiver 6) “[Facility name]. They’re not equipped, they’re not set up or staffed, they’re not resourced appropriately to be able to support kids with [my child’s concerns].” (Caregiver 5)
Practical challenges and emotional needs	“I’m not getting paid. And with my insurance, I have to cover – I believe the first five days, I have to kick out $150 per day…And then if she stays after five, then they cover. And then I have to cover the ER visit and I have to cover the ambulance.” (Caregiver 4) “And I have three kids at home and my mom. My mom has to have surgery, so I’m taking care of her. So I have three kids, my mom and my husband.” (Caregiver 13) “So we’re definitely a little over an hour away on a good day. So going back and forth. I think I shared before, we have the two pets at home as well, too. The pets were the harder part as well, because they can’t just obviously stay by themselves.” (Caregiver 12) “I have eight children and none of them have any type of disorder or anything besides him. So it’s kind of hard on the whole family. And – but like I said, I’m never going to give up. I’m going to find what’s going on. And it hurts so bad. Oh, it hurts me so bad, but I have to do it. I have to be strong.” (Caregiver 14)
Difficulties with caregiver-child communication	“My daughter doesn’t even remember doing what she did that night, which was a little confusing for all of us… trying to understand—do we tell her exactly what she did? She’s going to be waking up. Do we want to tell her? Do we want to not tell her? So we had a hard time trying to figure that out.” (Caregiver 12) “And yesterday she said she wanted some space, and I wasn’t hurt by it. Maybe I got to do whatever she wants to do. It just hurts me… why does she think she – that will make me better if she ends her life? To me, that doesn’t make it better. That makes it worse. Because if you love mommy and you love [your grandparents] and your [family] and your family, that’s going to hurt them.” (Caregiver 8) “I asked her why she did it, but she won’t tell me why.” (Caregiver 7)
Difficulties with clinician-caregiver communication	“The psych doctor that came in…she was very – she seemed kind of nervous to me, or I felt like it was – I didn’t feel too – like she didn’t wow me, especially…Because she didn’t talk to her, like soothing to her, like how you doing, blah, blah, blah. She just said, “Hi. I’m Dr. [name]. Do you have any – do you still have a plan?…She just came off to it.” (Caregiver 8) “I understand, [the social worker’s] job is to find a place, so they’re working behind the scenes and they don’t, necessarily, have to see me… But, on an emotional level, to meet [them], close to the beginning of the admission, face-to-face—I’m told that everything they do is over the phone with you, you don’t actually see them face-to-face. I’m like—phone is difficult for me. That’s just a quirk about me. I’m not good on the phone.” (Caregiver 3)
Need for self-care and support	“My life revolve around his life. That’s why I’m not working is because of his life. Because it – he’s my life.” (Caregiver 11) “I wanna find a support group with other moms…I wanna go over to the other parents that sees that…other parents that have to deal with that. That’s what I wanna talk to. Or see how they do it. Because I don’t have no support.” (Caregiver 11) “I didn’t do anything for myself yet. I’ve got to – not yet, because this is – I can’t worry about myself, but I do have to worry about myself.” (Caregiver 8)