TABLE 2.

Detailed quotes for readmission themes from interviews with care coordinators for children with medical technology dependency (N = 15)

Theme I: Reasons for acute care presentation are often unrelated to chronic illness
I. A. Unavoidable medical reasons
“Fever, vomiting, seizures. Seizures is probably one of our big ones.”
“Some come back [to the hospital if] the child’s gotten sick. Urinary tract infection. G-tube out. Some, the condition has gotten worse, so they need to go back into the hospital, And some have had to stay a little longer, because they had to change their care. Some trachs may need to be changed…in the wintertime, a lot of kids go back in when they have trachs…because of the weather.”
“Usually in the beginning, sometimes it’s just RSV season.”
“I have a child today who’s having [a planned] surgery.”
I. B. Potentially avoidable medical reasons
“Sometimes, not often, but every once in a while, they’re discharging the kid too quickly, and then the kid’s right back in. So don’t change anything in their routine for at least a week before you discharge.”
“This mom takes her kid to the ER all the time. She took him into the ER for pink eye. I mean, not the best use of resources…I’m like, “You really should just call the pediatrician, and get him in right away there.…[her response], “I just, I wanted him seen that night.””
“I had a situation that the child was sent to the emergency room. It was like miscommunication between parents and the physician over the phone…I think mom understood that she should take the child to the emergency room, while it wasn’t really what the doctor meant.”
I. C. Parental reasons: comfort/preparedness
“I think just out of being scared, that they would just rush to the emergency room if they just don’t know what’s wrong with their kid. Just depends on the age, I think, too…Smaller kids, I think they run. Bigger kids, I think they wait that time, maybe 24 h, to see if things are going to improve.”
“Sometimes at the very beginning, it may be the fear that something is terribly wrong. After a while, they’ll discover that this is how the child would react to either too much mucus in their airway, that could have been easily suctioned, and the family maybe didn’t have a good technique of suctioning. You know, the saturation levels will decrease. Alarms will beep, and family may panic. So at the very beginning, it may be just simple lack of knowing what’s the norm.”
A: “We’ve had quite a few occasions that the child is taken to emergency room for G-tube malfunction—falling out. So this is something that maybe shouldn’t be happening that often.
Q: Shouldn’t be happening meaning the family should learn how to…?
A: How to reinsert it, yeah…Be more comfortable at least, with it.”
I. D. Environmental factors
“if there’s some sort of power outage.…If power’s out, the electric company, the gas company—they get letters letting them know there is this family in your area that needs to be attended to first. But if definitely it’s not turned on, you need to head to the hospital.”
“I have a family who had a mice infestation in their apartment… the nurses—they weren’t going to work there, and nursing stopped. And then mom has three other kids. There’s a dad, but he works all the time. So it’s just her. And her three younger kids are all under four, so it’s just toddlers and everything. And eventually the child was hospitalized because it was just too much. No nursing, mice running around, just mom.”
Theme II: Need for emergency care plans to avoid readmissions
II. A. Care plan for emergencies
“I have a mom—she’s very good at troubleshooting. Her and her doctor have a protocol. Because sometimes the nurse will say, “Let’s go to the ER.” And mom says, “Nope, we’ve got to follow the steps.” And she has been able to for three years now—it’s just more recently he has had to go to the ER and then been hospitalized. But for three years and following the protocol, she’s been able to…avoid ER and hospitalization.”
“I’m continuously educating them not to use the ER. “We’re going to call your pediatrician. These are going to be your first steps. You’re going to work with the nursing agency…You’re going to follow the pediatrician’s advice. You’re not going to go to the ER for a sore throat.” Or, “You are going to go if you’re alone and the G-tube comes out.” “You’re going to know an emergency protocol to call 9-1-1.” We help set up all of that, before they go home. But then it’s also reinforced by the nursing agency, and also the hospital.”
“if I can troubleshoot and solve something for those families, and occasionally. …without my intervention, the child could be either hospitalized or we wouldn’t know where to go or what to do. So this is really rewarding.”
II. B. Home nurses support emergency care plans
“The nurse is going to be there to handle some of those crisis situations.”
“I have a case that the nurses are really, really good. I mean, and they do PICU stuff in the home…Like keep them out of the hospital…It was just one of those conditions that—it’s an incurable disease. But like they would just do IVs at home. They’d do everything. Blood, everything, at home… they would have to really, really, really, really sick for them to have to be admitted.”
“That’s where those strong nurses coming in at, is just, “This is what we’re going to do. We’re going to give these nebulizer treatments around the clock, for 24 h, for ten days. Whatever. We’re just going to keep this kid out of the hospital.” And that’s where the dedicated nurses come in.”
Theme III: Lack of home care nursing leads to increased hospital utilization
III. A. Rehospitalization due to parental exhaustion
“If you don’t have the nursing, then the parents are up. If the parents are up, then they’re tired. If they’re tired, then mistakes can happen. Then what happens? Then the child has to go back into the hospital. …if you don’t have help, you can’t do it all. You can’t do 24/7. I mean, I have parents that try. But you know what? And then they become ill. And then I’m always like, “If you don’t take care of yourself, who’s going to take care of this child?””
“Unfortunately sometimes when we see those cases that it’s so hard to find nursing coverage for, we know that the families are stressed physically and emotionally. And sometimes we see increased number of medical complications and even hospitalizations or ER visits, that possibly could have been avoided if there was better nursing support for the parents.”
“didn’t have any nursing, so she took him to [the hospital], and they had to admit him. Because the nurse was off or sick or what have you, and the foster mom said, “I just can’t do this.”
III. B. Rehospitalization due to lack of medical expertize at home
“They do go to the emergency room, because when their child gets sick…There’s no nursing in the home. So a lot of these parents obviously although they’re quote unquote experts with their child, they’re still not medical professionals. So if they do see that their child is experiencing something that’s beyond their skill level, they know that it’s time to go to the emergency room and not take any chances. So unfortunately sometimes when we see those cases that it’s so hard to find nursing coverage for, we know that the families are stressed physically and emotionally. And sometimes we see increased number of medical complications and even hospitalizations or ER visits, that possibly could have been avoided if there was better nursing support.”
“families may end up at the emergency room just because … the nurse didn’t show up… They may be tired. Child may be running a fever, so they anticipated something may go wrong… they kind of act in advance, knowing that they don’t have the support.”
Theme IV: Families attitudes towards and negative impact of readmissions
IV. A. Overall hesitant to return to the hospital
“I would say if anything the families try to keep them home longer than a … normal family would. They’ll do the Diastat. They’re not running to the hospital anymore with these kids.”
“Their G-tube comes dislodged, and…they tried to reinsert it. These parents—they’re amazing. they really are. They’re better trained than I—when I was on the floor, I wouldn’t know how to put a G-tube back in…they don’t want to be back in that hospital.”
“at least my families—I can only speak for mine—they don’t readily go to the emergency right away. The only way they’ll do it is if they really see—like right now, one of my moms, she says, “We kind of know her symptoms. So we try to just work with it, to keep her from going.” So they’ve learned how to.”
IV. B. Negative impact on the family
“I think it really broke her heart to even be separated from her daughter within that time… she has to be at home with her other children. So I think sometimes we forget that being disconnected from your child…—she can’t not only see her mom every day like she was prior, but her siblings.”
“Trips to the emergency room…if it’s in the middle of the night, everybody’s got to be up. And everybody’s going to get in the car and go… it’s such a disruption.”
Q: Do families feel penalized for going back to the hospital if they need to?
A: Because they think that they didn’t do a good job or something or keeping them…? Um, I think new ones do…“Oh, I did something wrong.”

Abbreviations: ER, emergency room; IV, intravenous therapy; PICU, pediatric intensive care unit; RSV, respiratory syncytial virus.