Families’ experiences with the diagnostic odyssey

Diagnostic_odyssey_Vector_Robert-Salmon-storm-at-sea-Wikimedia-Commons_260x260Diagnosing the cause of a child’s developmental difficulties or delays can take months or even years. The process can take a toll on both children and their families as they struggle to find out what is wrong.

Genetic counselor and parent Nikkola Carmichael, MS, CGC, recently published the results of her work documenting the diagnostic odysseys of ten mothers of children with neuromuscular disorders. “The results,” she writes on Boston Children’s Hospital’s Vector, “highlight the distress…even minor medical procedures [can cause] and the benefits to the family of obtaining a diagnosis.”

Learn about her study’s implications for health care providers on Vector.

 

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