Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy: A Qualitative Study.

ABSTRACT:

Purpose

Duchenne muscular dystrophy (DMD) is a rare neuromuscular disease with no known cure. We sought to update over 30 years of research reporting on the diagnostic delays in DMD.

Methods

Through personal interviews, this study qualitatively explored parents' experiences regarding receipt of the DMD diagnosis and the guidance for care provided. Thematic analysis identified themes and provided answers to the research questions being addressed.

Results

Four themes emerged: (a) Dismissive illustrates little consideration of parent concern in the diagnostic process; (b) Limited Knowledge describes misunderstandings about clinical signs, recommended screenings, and testing to achieve a diagnosis of DMD; (c) Careless Delivery reports on the manner in which the diagnosis

SUBMITTER: Bendixen RM 

PROVIDER: S-EPMC5389929 | biostudies-literature | 2017 May - Jun

REPOSITORIES: biostudies-literature