Findings 2

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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