TABLE 3.
Representative Quotes for Each Theme and Subtheme
| Themes and Subthemes | Representative Quotes | |
|---|---|---|
| Theme: “He writes his own book” | ||
| Subthemes | ||
| Child’s baseline often misunderstood | “I think that on this floor, they really rely on us to say this is not [child] normal. Because like [child] and a lot of other kids on this floor, like I said, [child] and these other kids, they don’t present a way other kids would present their illnesses, and it’s really up to the parents who know what they look like when they do these things. So, I think that they rely a lot on us to say this isn’t her normal.” | — |
| Family compares illness to previous illnesses and baseline, which team usually does not know | “He will cry. It’s a very low-pitched, soft cry. I mean he does—he’s low-toned anyways, so like if he’s twisting, where you see like him moving more than what he normally does, that’s kind of an indicator too. He’s also hooked up to a pulse [oximeter] 24/7 at home, so like his heart rate is also an indicator for us that something else is going on.” | — |
| Parent intuition is difficult to convey | “She’s nonverbal. So, just the same way that parents pick up from their children that aren’t able to talk yet, you know, like a year and under. So, we have, as her parents, have picked up on signs that she does to where in specific when she is in pain…. It’s like more of like a [imitates noise] breaths noise and occasionally, and honestly, probably less than 10 times her whole life, actual tears. She’ll have tears that come out of her eyes.” | “So, that can be kind of hard to explain like we know something is wrong but it’s hard to explain like—She can’t talk, but we know what she’s showing us. But they’re usually pretty good like knowing that like we know what’s going on…. We’ll try to explain it, for example, like, she likes to rock for comfort, sometimes, but she also rocks a different way when she’s in pain… she’ll tap her left hand for fun, but then I guess it could also be a seizure.” |
| Theme: informal, learned pathways to navigate complex and confusing system | ||
| Subtheme | ||
| Understanding how to listen to and negotiate with trainees | “But book smarts and experience smarts are very different things, and like right now, it’s June, they’ve been doing this a while, and they’ve figured out that they need to listen, but I don’t know. I mean, that’s why they’re residents, they’re learning. And that’s sometimes the hardest part is getting through to our resident that just because your textbook says, does not mean that that’s true in this case.” | “And I usually don’t like to deal with the residents or the fellows. I usually want an attending just because if he is truly sick and getting worse, then we need to cut the middleman out. That’s the only fault that I had with this hospital. And I like it, because they need to learn too, and seeing the worst is what they need to get their experience from. I mean, it’s nothing that’s a problem as long as I can get to the attending.” |
| Tools and strategies for families and clinicians to see the same thing at the same time with the right clinician | “I mean, when she was a baby and we were in…it was really from a time she was like 3 months old until she was about 9, 10 months old. It was a really bad period for her. They were watching them all the time because I could see on my page how many people have viewed it. And they were the only people that knew they were there. And I mean, when she got the first video and I sent the link to the nurse, at High Risk, she said that they watched it over and over again in the conference room there. Like, everybody was watching it. So, like, I know they used it.” | “I mean the YouTube page that I have, I used to…when we would get admitted that first year, whenever we would get admitted, I’d write the YouTube page and I’d write videos of whatever the problem was on YouTube. And then I put my username so that the team just had to Google search my name, and then, they could see the videos.” |
| Importance of an explicit, clear, and shared plan of care | “That’s one part about being in rounds, it’s always best to be in rounds because whereas if you miss them, you’re just going to be told what the plan was for the day and it’s going to be hard to get them down there and work out a plan. So, if I feel like I think something else need to be done, I just, you know, you have to verbalize it, you have to tell them. You can’t just wait for them to do it.” | “I’m sorry, but like this week we had med students, we had residents. There was one day we have very different plans. We had five different plans on one day. I’m a pretty laidback soul and I know that when students walk in to take it with a grain of salt, we know that they’re communicating with the proper people. I know that they…that the information that they’re bringing me was true at one point in time. I also know that they’re bigger and ongoing conversations happening, you know like with multiple teams.” |
| Nurse as trusted ally and advocate | “I’ve actually had several occasions where they call a doctor and the doctors won’t listen and they’ll say, ‘oh, they’re fine.’ And the nurses are like, ‘no, the mom says that this is not OK.’ And the nurse will fill that. If I’m saying it’s not OK then it’s not, and they will overstep the doctors and call in the ICU team to come and evaluate them. And I know that takes a lot for a nurse to overstep what the doctor says, but I’ve had a couple of good ones that will listen to me no matter what a doctor says.” | “I think because they [the nursing staff] are more like you. They get it. Just like this morning, we had a bad issue before we came in here. I’m going to be honest. I couldn’t get a doctor to do anything and I they told me there was nothing they could do.” |
| Value of shared experience with clinicians in child’s illnesses and in building trust and respect | “Not that anyone is ignoring her, but I want someone who knows her or at least has had her under their care at least once to know how she is just like [Dr 1] told [Dr 2] ‘She doesn’t present like a normal kid. I would do this if I were you.’” | “So that has been a blessing having that continuity with the yellow team. The biggest thing, and I think the biggest problems and I think it’s the same problem everywhere, is the specialties, they aren’t very good at communicating. But like I said, that week that we all rounded at the same time, there was so much more communication, and it was so much better. Like, we get our questions answered at that time.” |
| “‘Do you want to be involved?’ And if you say ‘yes,’ they’ll wait to start, until you come out. And then, they go and just jabber-jaw about your kid for a while. So, a lot of it is technical jargon, you know, that they use. This test was this; this test was that, and these numbers were this, and if you don’t—if you haven’t been through it a lot, then you don’t know what they mean.” | — | |
| Families create organizational tools that are little informed by or informative to hospital-based tools | “We had a large white board in her room where we…it’s just like a communication board. And another calendar in her room that anything that pertained to [child], I mean, some of the meds and stuff in my planner the nurses don’t need to see, but anything that pertained to [child] that the nurses would need to know would be on that calendar as well.” | “I saved [her weight] in my phone now, and I make a note in my phone so I can tell them the last time she was weighed was on such and such date, and she was this many kilograms, and I make a note on there because I realized, oh yeah the last time that you were here you, like, equipment was changed in her wheelchair or whatever and I would say that was pretty funny when somebody is looking like—they’re looking at her weight like what in the world, I said, ‘Oh, if you’re looking at the weight in her chart, that’s so off compared to now because this is a different wheelchair.’ Yeah, when she went from a power wheelchair to a manual, I think they thought like how did she lose like that much? I’m like, yeah, you can’t go by the difference in that.” |
| “Five years ago. 2010. Yeah. Going on six. But we were here, and every time we’re admitted, I know there’s a lot going on with the nursing and everything, but we give them the sheet, and the one nurse did somehow got it into the computer system as this [on her home schedule]. So, all they would have to do is look in, you know, here’s what’s needed, here’s what’s needed, here’s what’s needed.” | ||
| Theme: importance of advocacy and persistence | ||
| Subtheme | ||
| Clinical team recognizes and respects family as expert with their child | “‘Is there anything we should look for while you’re gone, what her seizures look like? Is there anything we can do to calm her down if she gets upset?’” So, I think they rely on us a lot to really kind of help out. So, I always kind of wonder how that goes for the kids whose parents aren’t able to be here as much. I wonder. That’s got to make it a lot harder for them to get the kind of care that they need. Luckily, I’m able to be here.” | “They always look at me and dad. And so, I guess, like, fully, like…because he is hard to read. Like they can say—if they’re familiar with them, they’ll say, you know, ‘Oh, I think he’s looking back to baseline.’ Or, ‘He’s getting there to baseline, what do you think?’ If they can—they know about where—but if it’s someone that’s completely not familiar, they’ll always ask us what are our thoughts of it.” |
| “I think it comes from confidence. I mean, like I mean, I clearly know what I’m doing, and the floor staff knows me here.” | — | |
| Family has confidence in role as advocate and ability to advocate, which can take time to develop | “It took a while to kind of get that courage even with my medical background. It took a couple like ‘oops’s’ or kind of trends in the wrong direction for me to say, ‘OK, you know, I have to be his voice because if I don’t speak for him nobody will.’” | “I think most people are careful to say ‘You know him better than we do so tell us,’ which we really appreciate, but once a while, there’s somebody who takes the opposite view, and then that puts us in uncomfortable position of having to be, you know, more assertive, yeah, slash, aggressive.” |
| “I think it makes me a better advocate because I’m not scared to speak up. I think a lot of people, you know, if they don’t have the knowledge behind them, then they’re afraid to speak up and say anything when they don’t feel like something is right. And my husband does the same thing, like he won’t speak up, he won’t say anything, even though he’ll talk to me and he’ll be like, ‘Well this doesn’t seem right. Why are we doing this?’ And then I’ll have to say something because he won’t say anything.” | “So, just going through that just seemed like you got to be an advocate for your kid, you got to say what they don’t want to hear just for them to do what they need to do. It’s almost like you got to piss some people off sometimes just to get them to say, even if they get mad to the point where they feel like, ‘OK. I’m going to prove her wrong.’ Whatever you need to do to prove me wrong, fine, but, you need to do something more than what you’re doing.” | |
| “I mean, if she’s getting worse and I feel like she needs more, I mean, I…I hound people, I don’t care. I mean, that’s just how I am. I’ve learned…I kind of learned you have to be a squeaky wheel sometimes.” | — | |
| Families learn workarounds to escalate concerns as advocates in the hospital | “So, unless it’s like one-on-one interaction with one of these people, I just kind of let it go. I just kind of pick my battles, you know. But, if this is somebody that’s coming down to check on her when I have a concern and they come by themselves, and I don’t feel that they’re really listening, I either ask for them to get somebody else for me to talk to or after they leave if I feel like I need to avoid the confrontation because I feel like my blood is going to start boiling, you know. I’ll wait until they leave and then ask the nurse or [respiratory therapist] whoever to contact somebody else and see if somebody else can come down. That’s not often.” | “And if I feel like I’m not being heard, like, if he’s—a lot of times, he’s on like the pulmonary team or the yellow team. And, and if I feel like I’m not getting heard, I will call the complex care and get his primary. I’m like ‘Look, we’re here; this is what’s happening. He’s getting worse. They’re not listening.’” |
| — | “I don’t like this, and we need to do something or I’m going to keep going until we find somebody who does, who will.” | |
| Coordination takes work and advocacy by family; care conferences are helpful but need to be asked for | “It’s almost like—it’s like every man for himself. It’s like I don’t feel like they really…Because it’s like with my son having cerebral palsy, it’s understood that there’s going to be other disciplines. We’re going to have to deal with neuro. We’re going to have to deal with pediatric rehab. We’re going to have to deal with pulmonary. And once upon a time, they used to at least communicate with them. Now, it’s like, they don’t—they don’t communicate unless asked. So, unless I actually go in there and say, ‘I need you to call them in order for me to get this done.’ If I don’t ask, it’s pretty much, I’m not going to get it.” | “Well, it’s just—well like having to repeat yourself too much to admission process. And with [child] had and so many different departments involved in his medical care, you literally can—it takes an act of God to get everybody together at once. You just can’t do it. Because of the time constraints.” |
| “I was like [the gastroenterology team] keeps coming in telling me one thing and then they keep telling you something different, and then they keep changing it on me. I was like so I need a conference where you’re all together and I need to know a plan. I need to know what we’re going, where’s A, B, C, D, what if this happens, what if that happens, you know, what testing are we doing, what are we going to do.” | “I said, you know my real dream for [child] would, my real dream is—I said we have to get a big conference room, but I would really like to just make everybody that sees her, you all get in a big room, and we’re going to just talk this out. I said do I think it’s realistic? No. But I said I would love this, because it is frustrating as a mom to try to figure this out and to try to even just make all the phone calls and do all these stuff….” | |
| Theme: “We’re not your typical parents,” parents and/or doctors learn roles as part of hospital care team | ||
| Subtheme | ||
| Lack of role clarity, and occasionally tension, for family versus care team tasks | “I think some nurses hate dealing with parents like me who are like ‘I’ll do it,’ you know. I always want to do everything. I think a lot of them wished that I was just like—I don’t know. Maybe they’re insulted. They think I don’t trust them. It’s not so much of that. It’s just, I don’t know, if it’s because I’m a control freak or what, but that’s my baby, I want to do it.” | “So, I think that it’s calmer and easier for her to hear our voices, me and her dad, and to feel our touch and our presence for that kind of things. So, there are things we like to do but other things like meds and feeds and diaper changes, I mean, we don’t make them change all her diaper.” |
| Expertise of family and care team can seem competing and/or adversarial | “Occasionally, you get somebody who’s just like, ‘Clinically, she’s fine. You’re being paranoid.’ And that always gets to us because we’re like, ‘We’re not your typical…’ We used to get that a lot in the beginning, like you’re a paranoid first-time parent. And so, we’re kind of like, ‘We’re not your typical first-time parents though.’” | “There are always people who think they know my child better because they have a degree. And I just won’t stand for it. If that’s how they’re going to be, then they can hand me to someone else with that same degree. Because I’m his mother, I’m with him day in, day out.” |
| Family is part of the monitoring system in the hospital, including of objective data | “Well, we become…we protect him from any, you know, mistakes that are made, we try to, and that just came from learning that you have in here because this is not a perfect system.” | “Like today, I’m a little nervous because like her [oxygen saturation] is down, just a couple—a couple percentage from what it was yesterday, which might not be a big deal, but it’s something that I’m going to keep an eye on…think more observant and more assertive as far as like making sure that we’re telling the doctors and nurses if we think there’s an issue even if maybe they haven’t recognized it yet.” |
| “I’m the one who knows her best. My job here is to interpret what I see because she can’t tell them. My job is to interpret and tell them what I see and then get their medical take on what we do about it.” | “I mean a lot of them know her, but not as well as I do obviously, so they don’t always catch everything that I would catch.” | |
| Family is central story-keeper and storyteller; it takes effort to tell right parts of story to right parts of team | “I think being prepared to give a little bit background without inundating them with information they don’t need so that they don’t shut down.” | “To be honest, I’ve really had to be very creative in terms of communicating that information mainly because they’ve always had that stereotype coming in the door. They’ll look at his chart and assume they know. So, it’s almost like I got to be creative in every way that I speak it…I give them enough they need to know that between your parameter, you need to know that he only does this, this, this, and this, so that you can get that information over. I almost have to know who I’m talking to, to know exactly what information they need to get what I need done.” |
| “What I see and why I think it’s the shunt. And we’ve endured it enough times now that they can pull up the chart and then, they’d say, ‘Oh, yeah,’ you know, ‘Mom said this before they do the studies,’ and they go, ‘Yeah, you’re right’...And I say, ‘Yes, I am. Thanks.’” | — | |
| “I think it can get lost in translation. I think any time you’ve got like a go-between, things can get lost in translation. That’s not to say that it does or it will, but I think it could. Yeah, I mean that way I guess that’s my main concern with it. And I just feel like too, when the nurses are in here and you’re trying to communicate something, you’re trying to make it as concise as possible.” | — | |
| Medical team continuity (across days and weeks) poses challenges to goals, trust, and understanding | “I think it’s a little harder on nights and evenings. They’re not as familiar with her as the day team would be and I assume that there’s probably not as many of them on at night either…We do occasionally run into somebody who just kind of blows us off and thinks that they’re medical expertise or education means more than what we’ve learned from her at home, but you don’t really feel it’s the case. I feel like their medical education or what we know about her are equal.” | “To be honest, what makes hospital communication difficult is the rotation of [physicians]. Like you only have—you’ll get an MD every single day, it’s almost like you’ve got to retell your story every single day… First, I’ve got to feel them out and see, OK, if they even going to listen to what I say, and then from there, I got to be quick and efficient with my time to actually say what I need to say and get it out. Or do I have to deal with, OK, I have to wait until tomorrow and get a better doctor and talk to them about what I couldn’t talk to the doctor about yesterday.” |
| “There’s a security that comes from seeing the same faces approach you all the time and they know the history.” | ||
| Theme: medical culture and practice do not consistently support partnership | ||
| Subtheme | ||
| “They wrote it in my chart by now” | “I almost feel like they got a note on his chart, like mom is a pistol whatever, but it got easier with time. …I need from the team to know, “‘She knows what she’s talking about.’” | “They knew that I’m very opinionated. They probably wrote it in my kid’s chart by now. Because they know I will call them, I don’t care what time of night it is. It’s their job to take care of my kids if something is different.” |
| “I think my way of doing it, I feel like there’s some very well-meaning parents that either don’t speak up or the other side is, I call them Attila the mom, and that’s very sexist, but usually it’s the mom.” | “Being friendly with them. I mean you don’t want to come off being bossy or I mean that’s any kind of person you, you know, work with or whatever. You don’t want to act like you’re better than anybody.” | |
| “It depends on the nurse, whether they take me as a rude mom or a concerned mom, you know what I’m saying?” | — | |
| Doctors often lack emotional intelligence and/or listening skills | “Or they’ll talk to the nursing or other doctors and kind of like you’re not in the room. Just like barking out orders and stuff, but you’re just sitting there. …And I’m all for teaching. I don’t care like there are a lot of them are always like, can we bring so and so with us to help learn…and I’m like, fine with that, I understand that, teach on. But when you’re teaching and you’re just teaching and you’re not interacting with the parent then that becomes an issue with me.” | “There is a resident on the team now who just seems annoyed when she has to talk to me. She seems annoyed that I’m even present for rounds. She seems annoyed when I speak. She seems annoyed when I ask questions. She definitely gets annoyed when I correct her.” |
| “It happens several times when they’re out the door and they’re moving, and I‘ve had other- lots- of physicians that will sit down or sit on the bed or the one today sat on the floor. You know, I mean, so that makes it a lot more relaxed environment then I’m standing at the door, trying to have a conversation with visitor trying to walk out and you can tell there’s not that room for conversation and feedback.” | “Most of them listen, but there’s been a couple of in the past where I’m just like, ‘Could you just take care of somebody else,’ now like, I don’t think somebody is going to listen to me…But I try not to make a large deal about that kind of thing because there are so many people on the team and most of them do listen and really take into consideration how we feel about things.” | |
| Hospital processes do little to integrate home care routines and/or medication schedules | “Because he’s on so many medications and we’ve had a lot of issues with medications being skipped or coming up missing or whatever. I don’t mind going over them with the nurses and the staff to make sure that he’s getting.” | “If I know we’re going to be admitted, I’ll bring all her meds with me just because it takes them so long to get it from the pharmacy. So, we bring our own until they bring theirs in and then we just take ours home.” |
| “I want to keep her on her schedule because if she’s not on her schedule, I’m going to go home, she will be all wiped out. She’s a routine kid. Most kids like their own routine. You mess up their routine, it is not pretty.” | “We like to do her trach care just because [child] tolerates things differently, and she is used to a routine. She doesn’t like for things to be done differently.” | |
| “I have a huge fight with everybody probably the first 3 days. Because, she’s on schedule.” | — | |
| Repetition of questions and care tasks in hospital can be frustrating | “So, there’s a lot of retelling your story in the first few days. You know, what’s going on, what brought you in, what did you see at home, in her.” | “What gets really frustrating is when you have to repeat like the med list over and over because they check it in the computer. They say let’s go over your meds and they’ll pull it up on the computer, you go over everything and tell them the last time that she had a dose of each thing. And then, an hour or two later, somebody else comes along and wants to do it again. That gets frustrating.” |
| “The other pieces you know when you’ve got a sick kid, this has been so frustrating every time I come here you had a medical student, then you have the resident, then you have the fellow. I agree that the medical student has to learn but can they not cluster the care?” | — | |
| Game of telephone: information gets lost and loops do not get closed | “Also, I think because there’s so many—it’s a teaching hospital. So, although, I’m all about teaching and education and it tends to be frustrating because you’re repeating yourself over and over again. Like you said, it’s a game of telephone where the more parties you have involved, the more twisted the story gets. So that’s why like we like to be here as much as possible to keep reiterating the same thing or correcting how we need to correct.” | “I think it can get lost in translation. I think any time you’ve got like a go-between, things can get lost in translation.” |
| — | “I got to go through the channel. I got to go through three people. I tell my nurse and, sometimes, she can call them because she has their cell number, but sometimes, she has to go to the charge nurse.” | |
| Theme: running on empty: stress, fear, lack of sleep, and loss of control in the hospital | ||
| Subtheme | ||
| Difficult to think and make decisions when low on sleep, food, and/or basic needs | “I’m usually pretty good at just kind of keeping all the notes together and knowing what question I want to ask just because I think we’ve had experience with it. But, like yesterday, I told [husband], I said, you know, we’re in day 13 now and I feel like my brain is full. So, I knew—and plus we’re exhausted because she hasn’t slept for like four nights.” | “Because you got to get yourself prepared to come home because it’s tiring being here and to be tired here and then you got go home, you’re putting him at risk because you’re tired.” |
| “We switch off. And that’s wearisome too when we had the other children at home and both of you are missing work and running back and forth and yeah, we have lots of good help. A lot of people stepping in and friends, we could not have done it seriously without them.” | “There’s just some things you can’t prevent is the lack of sleep or just the stress where you—or the kid himself if he’s up all night, well then you’re not going to get any sleep, so you’re not going to be as fresh on how to communicate your thoughts and feelings because you didn’t even know your thoughts and feelings because they’re so out of your mind.” | |
| Hospital is a lonely, scary, stressful, disorienting place | “I remember my very first shunt…time here with [child 1]. I was here for a week. ‘How do these parents do this!? I can’t do this anymore.’ You know, it’s like there’s no peace here. Well, I’ve been here for 3 months at a time, and a week is cake. So, it just all comes with, you know, the experience.” | “It’s not fun to be in the hospital by yourself, even as an adult. That’s a—a lonely sort of feeling and—and even, you know, the nurses and the, you know, nursing assistants, they’re great, but in my mind, like, they’re really busy with other things and they need to do what they have to do.” |
| Hospitalization means some loss of control and/or increased vulnerability to others’ whims and schedules | “You kind of lose all control, I think. Which can be nice, but at the same time can be scary. Because like we know him better than the doctors and the residents, so for them to make like a big decision about his care is frightening. So, we always kind of jump in and say, ‘yes,’ ‘no,’ or like ‘let’s stop and think about this.’” | “Sometimes they want to do blood pressures all night long and, you know, like every 4 hours, I think, they’re supposed to do it or something or once. And she is asleep, and she has a hard time sleeping, and I’m like ‘Do. Not. Touch. Her. When. She is. Asleep.’” |
| “Today, the team came in with a plan, yesterday, having us already said, ‘OK. We really want out tomorrow. We really are comfortable with this. If we can get oxygen in the home in a timely manner, we are really ready to go.’ And then, the team came in with the plan. ‘So, today, our plan is to wean oxygen and try to get him to room air. Are you OK with that plan?’ And [father] said, ‘No. We are not OK with that plan. We feel like at this point, he’s better off at home than here. We feel comfortable with this. We have resources. We have nurses. We,’ you know, and again, the attending, standing in the back, shaking his head to [father], “Yes, yes, yes.’” | “One of the first things I do when I get in the hospital, in the room, is organize his room because there is a lot of tendency for them to just kind of pile everything on top of that cabinet and I reorganize the room totally. Like, you saw that I put the chair over there because we don’t use it. I moved this over because we do use it. I take all the supplies as they bring them in and put them into certain orders, in certain orders.” | |
—, not applicable.