The hidden struggle: parents face uncertainty when doctors Can't name their Child's illness
NCT ID NCT01905865
Summary
This study aimed to understand how parents cope when their child has a serious medical condition that doctors cannot diagnose. Researchers surveyed 168 parents whose children had undiagnosed illnesses affecting at least two body systems for over two years. The study explored how the uncertainty of not having a diagnosis affects parents' ability to manage their situation and care for their child.
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Contacts and locations
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Locations
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National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, 20892, United States
Conditions
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