Findings 2

By sarahjmitchell, Updated

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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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Findings 2

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