TABLE 3

Communication, Coordination, and Continuity: Essential Scaffolding for CCI Care: Illustrative Stakeholder Quotations

DomainsStakeholder Quotations
CommunicationCommunication must reach all team members
 There’s a lack of communication specifically with the children that have multiple disciplines involved. If there’s 3 or 4 services that are caring for the child, that’s a critical issue. State 1, nurse, NP
 As a primary care provider, I can be made to disappear pretty quickly by a subspecialist who doesn’t feel that I have a role. If I don’t get communication regarding what’s going on with the child’s care in the specialty clinic or during their hospitalization, it’s pretty easy to eliminate me from the care team. Because if I’m not up to date on what’s going on, I’m not as much of a help to the family nor the patient either when they are hospitalized or when they get out of the hospital. State 1, physician
Parents fill in gaps
 One of our biggest supports has been that we have many of our doctors’ personal cell phone numbers and we can get in touch with somebody. She could look like she was having a stroke some days, and I could pick up a phone and I could call a doctor. They would say, “Wait 5 minutes. Call me back. Tell me what’s going on.” Had it not been for that, we probably would have been living in hospitals more than we have been. Communication is the key. It is the most important thing with keeping these kids out of hospitals. State 3, parent
 I really think that things like just-in-time coaching and telemedicine could actually be really, really useful. It’s frustrating that it’s taking so long to develop these entities when I think that these are the situations where if the provider on call had an iPad and that the family could show them pictures and they could work the problem together virtually, I think that it could save lives. It could save health care dollars. It could save stress, emergency department visits, etc. State 4, physician
CoordinationCare silos
 Many general pediatricians feel uncomfortable with some of the technological needs of these children and don’t feel comfortable writing, say, ventilator orders. But then that leads to parents going to their pediatrician for, say, vaccines, but then accessing the pulmonologist for tracheitis and the GI specialist for diarrhea and the neurologist for increased spasticity. But then there is lacking a person monitoring the overall care of the child as a whole. The parents feel frustrated, and I think that kids ultimately get worse care because their care is so siloed and there’s not necessarily one person looking over all of it. State 5, physician
 We definitely have a lot of providers who really care for these kids, but it’s all from different areas. Getting all those different groups to work together and figuring out who needs to be there at which part of the disease progression. Who is going to handle what aspect of the care? Who is going to admit the patient? I think it’s just getting everyone, including the family, on the same page and making sure everyone communicates and trying to avoid the territoriality that comes with medicine these days is difficult. That keeps kids in the hospital for long periods of time. State 2, physician
CCI coordination requires resources
 There’s a lot more things that can fall through the cracks upon hospital admission and hospital discharge that can go awry in the child’s life. It requires more energy, more time, more paperwork. Not just me, but also my care coordinator, in the hospital and out of the hospital. We’re dealing with, often times, not just a fragile patient, but families that are fragile. So we have to be attentive to their emotional, financial, and social needs as well, which are usually more pronounced and more complicated than other hospitalized children. State 4, physician
ContinuityMust be intentional priority
 One of the big issues on some of our really long-term kids is the fact that attending physicians change frequently. It’s a really difficult thing and sometimes it even gets to the point that the parents realized it because their baby has been here for 6 or 7 months. We have a family on the unit now that is a good example of it. As a charge nurse, she one day voiced to me her difficulty that we have a plan that’s in place for 2 weeks. Then the new attending comes in and changes that plan. “And if that keeps on happening then my baby will never leave here.” Those were her words. State 1, nurse, NP
 Particularly for kids with really complex medical needs, they’re sort of chopped up into the specialties. So you’ve got the GI doctor, you’ve got the pulmonary doctor, you’ve got the developmental pediatrician, and sometimes, often, there’s not really 1 physician coordinating everything. So a lot of times when I’m talking to families I ask, “Is there 1 doctor that I can talk to?” And there’s not. And particularly for kids as critically ill as some of these kids are, the fact that is stunning to me that there’s not 1 person kind of looking at this whole child. There are like a bunch of different body parts, and nobody’s really paying attention to all the medicines and all of that. State 1, other professional
A leader helps
 We didn’t have any 1 doctor overseeing her. There actually were 3 for a while…They tried their hearts out to communicate and stay on top of her. But you could see a decrease in care because that system wasn’t in place. Now we’re back down to fortunately just 1, and again her care has definitely improved because we’ve got 1 person who’s the lead. State 3, parent
  • GI, gastrointestinal.