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Findings 2
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It's so difficult to sort things out
1. Families learn a great deal about the healthcare system and "fight" for the care their child needs
I wish it was easier for my parents
Why is it so confusing?
2. Everyone hopes to "fix" the child.
There are lots of medical plans and opinions.
Communication can be complicated.
Meanwhile....
3. The child's episodes of serious illness and recovery shape the family's expectations
No-one wants to think or speak about the possibility that a child may die...
... but children and their families have an awareness of their fragile situation
This is too hard to accept.
4. Introducing palliative care can be problematic ...
seen
5. ... but "palliative care" provides a necessary counterbalance in ways that are both...
and
unseen
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