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Table 4 Reported barriers and enablers to the transition from hospital to home

From: Improving transitions in care for children with complex and medically fragile needs: a mixed methods study

TDF domainThemeExample
KnowledgeClinical Care Guidelines/Policies“The only thing that I can think may be… I know that the American Academy of Pediatrics have done a bunch of sort of issues or work around having a medical home back when I was in training”
Unaware of Supports/Resources“You know, I guess the big thing in our community is knowing what’s out there for them, even from an acute care side, whether it’s the [pediatric tertiary care facility]. If you have a child that’s going home, being discharged from the [pediatric tertiary care facility] you don’t necessarily know all the supports that are in all the home communities that these children are going to. And I think we’re the same way, is that we don’t always realize all the supports that are in place.”
SkillsPsychomotor Medical Skills“You know, we do chemotherapy here. We look after port-a-caths… Vagal nerve stimulator[s], we know how to use the magnet on it that we’ve trained up on. So our nursing team is very capable of and eager to learn things to be able to keep these kids here and not travelling back and forth as much. We just have to know about it.”
Behavioural regulationIdeals (Need for Comprehensive Care Coordination)“I think there needs to be care coordination on both ends. I think there needs to be good discharge planning from the [pediatric tertiary care facility] side. But I also think there needs to be somebody to provide that discharge planning too in the local community. So there needs to be pediatric liaisons in the communities to give that information too.”
Beliefs about capabilitiesHealth Care Provider Confidence“But the overwhelming theme there is that we have a system that isn’t tuned to the needs of children and care for children outside of the specialized centre. So you know… And people will say to you very directly, “I don’t have pediatric experience, and I’m not comfortable.”
Parental Confidence“I’ve seen it with our newborns that come back that have been born premature and have been in NICU, and now they’re doing well, they’re there just to grow. You know, they don’t need the monitoring, they don’t need that intensive level of care. And we find parents have a very difficult time understanding that the baby is now theirs to take care of. You know, they’re not ready that now they’re on the normal care track that they would have been on had baby been born at term.”
Beliefs about consequencesFamily Burdens“Because you’re worried enough about your child, you don’t need to worry that, you know, is the community ready, are the staff prepared? That, you know, should we land in the emergency room in 2 days’ time, are they going to know who my child is? Are they going to know what he or she needs? Are the staff at the nearest pediatric unit prepared to take care of them or know what to do if something should arise?”
Hospital Readmissions“I think the consequences is sometimes it leads to increased admissions into the acute care unit.”
Breaks in the Continuum of Care“Because sometimes they might end up presenting back to our emergency department, for example, before they’ve seen any of us….They might end up coming in on a Friday night and seeing one of my other pediatric colleagues that didn’t get any of the documentation I received.
Preventable Adverse Outcomes“Well, I think we may miss some opportunities to avoid or to monitor for complications. And so in that way, you know, even if nothing happens, we haven’t been there being as diligent perhaps as we could be for quality assurance and ensuring that the best health care is being provided.”
GoalsHigh Importance to Improve Transitions in Care“You know, especially as we move forward and these [kids with complex needs] start growing up … they have more complexities on what they’ve already had with their original diagnosis, it’s something that’s quite important.”
Environmental context and resourcesDischarge Communication and Coordinator Processes“But it would really be knowing even ahead of time if there’s a [child] that is going to come home, what the expected date of discharge would be, what the expected needs might be, what resources, those kind of things.”
Community Resources“Well, we’ve started our own program here…. And it only encompasses certain children that we accept into our program. It doesn’t include all children. But those kids that are high needs kids that are in our program, then we follow them more closely. So we know their movement, I guess. So we know when they’ve been at the [pediatric tertiary care facility] and that they’re say coming home, and they have high care needs. But somebody that doesn’t fall into our program, there is nothing in place.”
Pediatric Tertiary Care Facility Resources“So one of the things that we use quite frequently with [children with cancer] is the family care coordinator (FCC) model. Or in cancer care in the adult world, they have cancer patient navigators. And so those the FCC, they’re assigned so many oncology patients. And they really kind of run the show. They know the ins and outs. They know what’s going on with them, treatment protocols, all that kind of thing.”