Palliative care needs for kids with rare diseases
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This study asks children with rare diseases and their families about what kind of palliative care (comfort and support) they need. It aims to understand how to better help families through their child's illness.
Summary written for real people, not researchers, by Clin2.
Who can take part
- Your child is between 1 and 18 years old.
- Your child has a rare disease (as defined by the National Institutes of Health).
- Your child is not currently in the Intensive Care Unit.
- Your child does not have a Do Not Resuscitate (DNR) or Allow Natural Death (AND) order.
- You are the child's parent or legal guardian and are 18 or older.
- You are not currently experiencing thoughts of harming yourself or others.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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