Findings story

Findings story

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  • 1. A child develops a life-limiting or life-threatening condition ... 
  • ... and the family story is permanently changed 
  • The child and their family must quickly adapt to their new situation. They  begin a lifelong process of learning.
  • 2. The child does not wish to be defined by their condition despite the impact it has on their life.
  • My parents will decide. I want to see my friends 
  • We have so much to think about and sort out
  • There will be one treatment, followed by another and another
  • 3. Families are disempowered by their situation. 
  • There are many clinicians to meet and things to learn. 
  • 4. The child's condition and care become a family vocation. 
  • I want to play outside with my friends 
  • Home becomes a healthcare system.  The family continues to learn, adapt and negotiate their child's care.  
  • I need to call work 
  • We must collect that medication 
  • How are you all today? 
  • 5.   Key personal relationships are developed with clinicians 
  • Often a few clinicians who "look after" the child and family are particularly valued. 
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