Major Themes on Caregivers’ Perceptions of Their Hospital Experience

ThemesCategoriesCodesIllustrative Quotes
  • Safe in the hospital

  • Hospital stay made me feel better

  • Trust in the team

  • “Make sure”

“When you’re here you’re just like, ‘What’s going on?’ But I feel safer here too because you know, it’s a hospital. Everything here is medical and in case of an emergency, I’m already here.”
“I just knew that he would be in good hands and that was the main concern. So if anything happened, they knew how to react to his situation.”
Hospital interventions
  • Monitoring makes me comfortable

  • Reassurance with testing

  • Feel better with discharge instruction

  • Feel better with CPR training

“I think they put this issue to rest. I mean you know we checked out his heart, his heart is good. His head is good. Vital signs, good heartbeat. Doesn’t [desaturate] when he’s breathing less. So I mean I feel like, I don’t know, I think we put this issue to rest pretty sufficiently.”
“It just makes me feel like they’re really watching her, making sure she doesn’t have another one while she’s sleeping.”
“We already went through the CPR class once but he wants to show us the CPR class video again. It’s always good to just refresh just in case, you never know with the little babies…so yeah, nice little steps for us to go home with, be more comfortable and relaxed with him.”
Making sense of it
  • How the team explained it

  • Normal behavior for infants

  • Infant looks better

“I understand. I mean I know infants just, they’re not–they’re new to this world. So I completely understand. I don’t feel like they were sugar-coating anything or didn’t want to look into it. It’s understandable.”
“Yeah, unexplained event. It’s basically unexplained, and I mean it blows my mind [laughs]. I don’t know what to think. I’m like okay, I hope it’s just that. Because it seems like they did a lot of–I mean, the scan, the testing already. Which is EKG, and then chest x-ray, and monitor for like 24 hours, and everything’s benign, which is good.”
UncertaintyWhat if…?
  • Worry about an underlying problem

  • What if it happens again?

  • Fear of the future

“I’m okay. Just worried, you know, if it happens again. We’ll be right back over here.”
“Just seeing him like that, it just looks really ugly. And I’m just afraid one day that he’s gonna be in a deep sleep or I’m gonna check on him and I’m not gonna have woken him up soon enough.”
Increased vigilance
  • Watch him closely

  • Attentive

  • Alertness to changes

“Probably I would be more, more attentive, knowing that that happened one time, it could happen another time. So I will be more aware of everything.”
“I’ll be more, what do you call it? Not overprotective, but more alert to check on her a whole bunch more.”
No answer
  • Unknown is concerning

  • No answer

  • Looking for cause, not finding it

  • Still worried with negative test results

“No, like I said, I’m still gonna walk out of here a little iffy and confused on what really was it. Because I did ask the doctor, two of the doctors last night, what exactly was the cause. He said they really can’t point it out exactly what it is because he’s so small. I understand that but at the same time, you guys ran all these tests. I would think that at least you know something. So I’m still gonna walk out of here, is it reflux or was it a seizure?”
“So it’s just something that he’s–they assured us that it’s normal for babies especially his age, which I can definitely see, but–it’ still unknown. If it was something we could correct, with behavioral change or medicine, that would be great. But this is just something that we have to keep constant vigilance over.”
Conflicting emotionsReady to go but…
  • Relieved but not

  • Ready to go but worried

“I’m ready to go home but I feel safe here, because I have hands–I have the nurses, the doctors, they know what they doing. I feel more safe here, but at the same time I’m ready to go home. You know, he’s tired of being here and poked 24/7 so, I don’t know. I want to go home but, like I said I feel more safe. Y’all have more experience here, you know what I’m saying?”
“I guess more reassuring. I mean I’m okay I guess that he doesn’t have these other issues that they were worried about. But, I mean if it would have happened and more testing would have been done then I would have been okay, you know?”
“Well, I feel relieved but not. Because like, there’s a lot of unexplained medical things. But like, I mean I’m relieved because nothing’s wrong with him at this time, but really not because if it happens again then more tests [are] needed.”
  • CPR, cardiopulmonary resuscitation; EKG, electrocardiogram.