Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study.
Roxanna M Bendixen, Amy Houtrow
PMID 27743907WHAT IT FOUND
Parents of boys with Duchenne muscular dystrophy described being dismissed, receiving a diagnosis abruptly, and getting little guidance afterward.
Their concerns about motor delays were often not acted on.
Key findings
01Parents described communication breakdown: feeling dismissed, providers having limited DMD knowledge, diagnosis delivered carelessly, and little guidance afterward.
02Eight parents reported a wait of 2 or more years before a final diagnosis of DMD.
03Fourteen parents said they received little guidance after the diagnosis.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The interviews were with parents only, so the paper does not show what providers said or what records show. Parents were recalling a diagnosis that had happened 3 to 10 years earlier, and recall bias is possible. Most participants lived in the southeast or northeast, although they lived in eight states. The study used 15 interviews and found no new themes after five extra interviews, but it cannot say how common these experiences are.
Declared interests
The supplied article lists NIH extramural research support but does not give a conflict-of-interest declaration.
The easy way to misread this
Do not read this as proof that nurses caused diagnostic delay. The study reports parents' remembered experiences, and it does not isolate the role of any provider type.