TABLE 3.

Domains, Associated Themes, and Representative Quotes From Parents and Health Care Providers Regarding Transitional Care Priorities and Goals

Domain and Themes	Representative Quotes From Parents	Representative Quotes From Health Care Providers
Domain 1. Family engagement	“We’re the best advocates for her. Sometimes they’ll make decisions, and we’ll ask them either to wait a day, hold off on it, or slow down the amount of what they want to do.”	“My philosophy is that you involve them in all the decision making. . . . And I think that makes them feel a lot more participatory, that they have some power here, and then they pick up the ball and they take on more responsibility.”
Themes	“With my son’s condition, it’s a very lengthy process, so being involved is really—it’s really important. It’s not just a simple in and out and then he’s done and he’s going on with the rest of his life.”	“Sometimes it’s a challenge when the families have a very strong agenda . . . in medical recommendations and home goals.”
(a) Advocacy for their child	“I feel like they definitely could have talked to us more. We were literally just in the room alone like 90% of the day, just . . . waiting for answers, for anything.”	“It’s okay for a family to say, ‘I don’t agree with you.’ And to ask, ‘Okay, can you help me understand why you don’t agree with me?’ . . . In health care we hear that and automatically we’re guarded.”
(b) Parents’ role in decision-making		“We do a lot of work with the family . . . being part of the rounding in the mornings. But what happens the rest of the day? How do you keep that thread? We just do it in the morning. . . . All that time, you know, is sort of lost in between. . . . It’s just a very difficult place to be and I don’t know if I could do it. I don’t know if I could sit there and wait for hours for lab values that may change the plan.”
(c) Communication with health care team
Domain 2. Respect for families’ discharge readiness	“It’s not even on our radar right away. For him, he was probably here 4 days before I saw him improving and felt like then we could start thinking about it.”	“A lot of these families plan on discharge right when they walk in. How long? That’s the first question. How long am I going to be here? What do you think?”
Themes	“I don’t think home until she comes out of the PICU. Then the thoughts are like, okay, if we can go to the floor, I can do this at home. . . . When she comes to the floor is when I start thinking, okay, we’re getting ready.”	“I want families feeling like they’re being heard and . . . when they leave, that they are really feeling good about it, that they’re not leaving with reservations in their minds or concerns.”
(a) Varied readiness to discuss discharge	“I’m feeling like the issues that have concerned me during this admission are not resolved but then feeling like I’m being pushed out the door anyways.”	“I think they always want 1 more day and it is really hard to be like, ‘Okay you do have to go.’ A lot of them need respite.”
(b) Respect for families’ perspectives	“I feel like making sure that all the goals, as long as they’re attainable, are met so you’re not left going home with 1 thing not reached and then having a downfall and having to come back—it’s happened to us before”
(c) Fear of readmission
Domain 3. Care coordination	“If there’s a question, who am I actually going to call? Is it the nurse that discharged me? Is it the cardiologist? Is it the intern?”	“Follow up with these chronic families. Make a call the next day. How are things going, how was your first night? Just to make them feel like you know . . . we’re still connected. I’m not doing this alone. I think that makes all the difference in the world. Making a follow-up just to make sure. Is there anything we should have done differently? What can we change to make tonight a better night? How can we help you more so you don’t wind up back in the hospital?”
Themes	“Usually, when you’re discharged from a hospital, you’re not up to par quite yet. You still take another day or 2, so any appointments that have been scheduled for the next 2 days after discharge, you usually cancel. . . . Or physical therapies or any of those, you have to cancel because she’s not up to par to getting out and doing that. I think that’s a disruptive piece.”	“Sometimes they find it very frustrating when they won’t get a phone call back or ‘Oh, it’s not our problem anymore, call your PCP.’ Some kids don’t have a PCP because they’re so complex that they don’t have one person that oversees everything.”
(a) Transportation	“But with the total parenteral nutrition company, which is really important, we didn’t have anything set up. . . . We were told that we had to just call the . . . 1 800 number we had to get orders like rushed to us. . . . That was probably 1 of the most stressful nights we’ve ever had. . . . It was crazy because it was our first night home and it’s like, what if something goes wrong? It was just a nightmare. Stuff didn’t even come until the next day. It was all late the next day. It was just a nightmare.”	“Many times they have a chronic illness, so there’s a slew of appointments, and they have competing demands. You’ve got parents who may have other children and have to be present for that. What’s realistic, you know, because to be in a hospital setting 3 or 4 times a week, or even 3 times a week, it’s demanding.”
(b) Medication, equipment, and supplies	“Make sure that the equipment and everything is there before that patient comes home. . . . Simple things like that I think would make a world of difference . . . just simple little basic things.”	“Initially everything is just so overwhelming. They don’t know who their home care company is; they just know that something shows up. They don’t know whom to call if they run out of formula or whatever, all those things are factors, major factors.”
(c) Follow-up after discharge
(d) Home environment
Domain 4. Timely and efficient discharge processes	“I would plan it for as early in the day as you could versus late afternoon, evening just because again, that whole window of getting reacclimated to home. It’s better if you have a better part of the day to kind of reestablish that before it’s just time to go to bed at night.”	“Everyone goes home at night, and anxiety is higher at night. . . . We don’t think of these things. They are running around filling prescriptions. When they get their child home it is 6:00, 7:00 at night and then they are paging everyone all night long. . . . Everybody wants to be out early, and I think having more daylight hours and knowing that they have still someone at home, a lifeline to help them. . . . Everyone always has a question.”
Themes	“I think the biggest thing for us because we’re so far from home is just going to be adequate time. I mean not finding out that morning that we’re going home that afternoon. That’s big. Just having time to plan and really sitting down with someone.”	“We never ask, Do you have a preference of when to be discharged? We do it around our schedule. When we get around to rounding and when the residents get around to writing the orders.”
(a) Time of day	“That kind of last hurdle stuff of actually physically leaving the building, that’s usually the . . . most frustrating. . . . Once you’re told you can go home, usually we’ve been here for a number of days. So we really want to go home and then it’s that last few hours where they say, ‘Okay, you’ll probably get released around noon’ and then it’s 2 o’clock or it’s 3 o’clock.”	“The discharge process . . . I’ve heard over and over again, is very . . . muddy, complicated, long. They just want to get out, you know what I mean?”
(b) Discharge processes
Domain 5. Pain and symptom control	“I would just hope that the ride would be smooth and comfortable for her, and she’s not in any pain whatsoever, and that we can make it there safely.”	“Make sure they have a good pain management protocol and an expectation on how the pain should improve after the surgery or admission.”
Themes	“I know bumps in the road after surgery are very uncomfortable, especially where she had an operation on her neck.”	“I think they want the kids to be well—it’s the quality of their life, do you know what I mean? These are complicated kids. They don’t want their kids to be in pain, I’m sure. . . . They want their quality of life to return to baseline, to where it was. I think that’s their goal.”
(a) En route home	“You want to know and understand how they’re feeling, and a lot of times when they’re younger, they can’t communicate effectively to you what’s going on.”
(b) At home
Domain 6. Self-efficacy to support recovery and development	“Like a couple years ago when she first got her central line, really making sure the parents going home were super comfortable with their new regimen. It was going to change everybody’s life, not just the patient’s. . . . Probably giving me a little more time and having the nurses oversee me do it in front of them instead of me watching them do it.”	“The most difficult thing for them is that they suddenly have gone from a very, very controlled environment where there’s lots of monitors and lots of people watching their baby, to them being all alone and feeling resource poor and vulnerable.”
Themes	“I’m a person who needs to know information. I will sit on Google for hours and try to find out information. So if that was in the discharge paperwork, I definitely would pay attention to it, and it’s usually not.”	“So knowing where they’re at and knowing what they can do independently for self-care, you know, the ability to have self-efficacy. . . . I think sometimes we assume too much, that they’re able to do too much.”
(a) Recovery from acute illness	“To be just tolerating her feeds, steadily maintaining and gaining her weight. . . . She’s slightly developmentally behind just because she’s been in a hospital all her life, but we can sense she’s so smart.”	“With the teenagers particularly, it’s getting them on board to buy into everything they need to do, just the whole learning curve with any child, getting the parents to understand . . . what are the side effects of treatment? What are you watching for? You have to have them really totally bought into that.”
(b) Ongoing development
Domain 7. Social reintegration and establishment of normal routines	“The transition home for him, it’s more of getting back into the at-home routine versus the hospital routine—bedtimes, baths, teeth brush. It’s very regimented at home and so for a reason, but that kind of all goes out the window when we come in here.”	“What is your normal routine at home, and how can we maintain it? Because that’s a goal they really have going into the hospital and transitioning home.”
Themes	“What’s important for me when we go home is just that he gets back into doing as much normal things that he can do as a kid his age.”	“When they are very well organized, they sort of have a mental model on how they manage things. . . . Their life came to a halt, they have other responsibilities, they just want to go to what they need to do and get back on the bandwagon.”
(a) Impact of hospitalization on routine	“We have to come together. Right now we’re in our 4 corners. So part of her coming home and getting back into our regular routine will help us come back and be together.”	“I think their goal is to get home and . . . have as normal a routine at home and get their child back into socially back to their baseline.”
(b) Return to activities	“Just a million and 1 kind of things that you, normally in everyday life, just take for granted as part of your normal day. . . . It’s hard to put into words. Everything is in the context of him and his illness, so it’s like everything else takes a back seat, and that’s fine, but there’s still things that have to be dealt with. You ultimately have to find time to prioritize right, if you can. A lot of times, mentally, you’re out of it.”	“Cultural competence is the most important thing. Because we take care of patients from all kinds of communities, and every community has some very different ways of handling this.”
(c) Hospital as a “second home”	“We are a small family of 4 . . . and we have no real family supports. . . So it’s been difficult trying to manage the schedule for my other son. . . . That’s been the biggest stress.”	“I think, some of the problems we have with families who come in and aren’t doing so well mentally anymore because they’ve just lost sight of who they are as an individual. We know that is part of compassion fatigue and caregiver fatigue. . . . There’s not enough respite care to really allow for that regeneration of the spirit.”
(d) Respite care	“It’s hard, but I mean at the same time, we’re used to it because [the hospital is] like a second home . . . right now for her. But I mean there’s really nothing you can do about it.”

PCP, primary care provider.