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. They live with chronic  uncertainty 
  • The child's episodes of serious illness and recovery shape their 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  
  • 3. Everyone hopes to "fix" the child.  ...
  • Communication can be complicated.    
  • There are lots of medical plans and opinions.    
  • This is too hard to accept. 
  • ... and introducing palliative care can be problematic 
  • 4. The palliative care counterbalance
  • By helping families to manage both complexity and uncertainty, including symptom control and talking about dying 
  • By supporting clinicians in the provision of compassionate care 
  • By providing a holistic view in care and decision making 
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