Sandy Clancy, PhD
Bereaved parent and Program Manager and Patient Advocate, Palliative Care Service and Coordinated Care Clinic, Massachusetts General Hospital for Children.
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The hospital is like a foreign land
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It’s hard to know which doctor is in charge.
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Parents get exhausted by the steady stream of specialists in the room.
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It’s exhausting to sort out all the different perspectives from specialists. Parents can ASK FOR HELP.
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Getting Clarity—Parents can say, “This is what I’m worried about. Should I be?”
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Hospital teams don’t want families to be confused.
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If a parent feels angry or upset, ask for help.
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All the people who helped me when we were in the hospital with Jack.
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There will be communication challenges. If you’re wondering, just Ask.
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Providers can behave differently on different days. But they always care.
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The Flow of the Day: Caregivers Change Shifts
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Self-Care: Providers will encourage parents to get sleep and get some air.
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Self Care: Finding help in the hospital
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Parents feel pressure to be “liked” by their child’s medical team, but need to feel comfortable expressing their concerns.
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For Providers—Self care is important for providers too!
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For Providers—Ask families about their life OUTSIDE of the hospital, to better understand their big picture.
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For Providers—Families can be quite different depending on when you see them.
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For Providers—Acknowledging feelings of failure. Encouragement to honor the care you and others have provided.
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Should the Providers go to the Funeral?
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For Providers—Child death impacts us and takes a toll.
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