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Table 3 Key Themes- Family Capacity

From: A qualitative study of health care providers’ perceptions and experiences of working together to care for children with medical complexity (CMC)

Family Capacity

Medical complexity

I think we’re dealing with a very complex heterogeneous group who have got very different needs, and some have got very difficult physical aspects, and some need a lot of behavioural mental health type aspects. (Paediatrician district hospital)

That baby was born with multiple complications, open heart surgery, he had some lung & kidney problems. After a couple of months, he came home on oxygen and tube feeds. Because of his complex problems he had a number of specialists involved with each. There’s the heart, there’s the lungs, he had a dietician involved and in a hospital, that’s very isolated – one area in the hospital doesn’t talk to another area, but they also don’t think about the impact that it’s having (Community Nurse urban)

Psychosocial complexity

Whether the family’s dysfunctional, whether the parent has the illness and the child is being presented as having the problem, but in fact, it’s far more complicated than that. I think complexity can look like all sorts of things. (ED Doctor paediatric hospital)

A lot of these kids live in remote areas, it adds a whole new level of complexity. (Paediatrician regional)

Mum said, “I’ve got 2 other children, I’ve just separated from my partner and there’s an AVO, and I’m living on the couches of friends with the kids, relying on them for food. So, at the end of the day, my concern is where I’m going to sleep tonight, not getting my daughter to her appointments”. Even though she’s obese and not worrying that she’s having Coco Pops because at least she’s having something to eat. (GP urban)

Parental expertise and their health literacy

I think that having the families carry the knowledge with them, ones that have a background of education do that, they know the condition of the child with a specific syndrome or condition better than 99.9% of the medical staff with those conditions and they carry that information, they have a hard copy to be able to show. I’ve seen it done with hard copies, I’ve seen it done with USB’s, where people leave their USBs at home or hard copy paperwork at home (ED Doctor district hospital)

The other ones are the hidden ones who…don’t present often, because they’re the families that don’t seek help. They’re the hardest of all because they [see] a range of people, so no one actually sees them. (Paediatric Nurse, district hospital]

Sometimes their expectation of health and what they want to achieve through it are quite different to what our protocols and policies and our standard of care, our guidelines pathways stipulate. (Paediatrician district hospital)

Care coordination pressure on the family

Complexity is all sorts of things and we look at it from a health perspective, but a family’s perspective, you put yourself in those shoes. Navigating health care is really, really complicated. We should be able to make it easier for them. (ED Doctor paediatric hospital)

Families of children with chronic and complex conditions get tired of telling the story over and over and over again to a new face all the time. (ED Doctor district hospital)

The challenge that families often face is organising assistance at home. I’ve been involved with a handful here, it’s such a mine field to go through all these different services that are involved (Social Worker district hospital)