Caregivers’ Perceptions and Hospital Experience After a Brief Resolved Unexplained Event: A Qualitative Study

Adrita Khan; Sowdhamini S. Wallace; Esther M. Sampayo; Carla Falco

doi:10.1542/hpeds.2018-0220

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FIGURE 1
Conceptual framework of caregivers’ perception of their hospital experience. Caregivers’ conflicting emotions toward discharge arise from a waffling between 2 opposing feelings: feelings of reassurance that developed from the safety felt in the presence of medical providers in the hospital, from monitoring and testing, and from making sense of normal infant behavior and feelings of uncertainty that developed from a fear of a recurrence of the event, from a perceived need for increased vigilance at home, and from finding no answers for or cause of the unexplained diagnosis.

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TABLE 1

Characteristics of Caregivers of Infants Hospitalized With BRUE

Characteristics of Caregivers (N = 18)	Value
Age, y, mean (SD)	28.9 (5.3)
Male sex, n (%)	5 (28)
Race, n (%)
Hispanic	9 (50)
White	5 (28)
African American	2 (11)
Asian American	1 (28)
Unsure	1 (6)
Highest level of education, n (%)
Graduate or professional licensing	0 (0)
Some college or undergraduate degree	10 (56)
High school diploma	7 (39)
Did not complete high school	1 (6)
Marital status, n (%)
Married	5 (28)
Living together	11 (61)
Single	2 (11)
Occupation, n (%)
Health care professional^a	2 (11)
Work at home as primary caregiver	5 (28)
Other	8 (44)
Unemployed	2 (11)
Missing	1 (6)

↵a Caregiver occupations in the health care field included 1 dental assistant and 1 nurse.

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TABLE 2

Evaluation and Management Approach for 13 Infants Hospitalized With BRUE

Diagnostic Test or Treatment	Frequency (%)
Head imaging^a	4 (31)
EEG	0 (0)
Electrocardiogram	9 (69)
Echocardiogram	0 (0)
Holter monitor	1 (8)
Chest radiograph	7 (54)
Laboratory tests^b	8 (62)
Social work consultation	1 (8)
Medical subspecialty consultation^c	3 (23)
Continuous pulse oximetry	9 (69)
CPR training	8 (62)

↵a Head imaging included a head computed tomography scan (n = 3) and a head ultrasound (n = 1).
↵b Eight infants received laboratory tests; laboratory tests included varying combinations of complete blood cell count, urine cultures, blood cultures, cerebrospinal fluid cultures, chemistry panels, respiratory viral panels, ammonia tests, venous blood gas analyses, and peripheral smears.
↵c Medical subspecialty consultations included genetics (n = 1), infectious disease (n = 1), and neurology consultations (n = 1).

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TABLE 3

Major Themes on Caregivers’ Perceptions of Their Hospital Experience

Themes	Categories	Codes	Illustrative Quotes
Reassurance	Safety	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.”
Uncertainty	What 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.”
		Watch him closely Attentive Alertness to changes	“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 emotions	Ready 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.”