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Titre : | Parental Reflections on the Diagnostic Process for Duchenne Muscular Dystrophy : A Qualitative Study (2017) |
Auteurs : | Roxanna M. Bendixen ; Amy Houtrow |
Type de document : | Article |
Dans : | Journal of Pediatric Health Care (Vol. 31, n°3, May/June 2017) |
Article en page(s) : | p. 285-292 |
Langues: | Anglais |
Descripteurs : |
HE Vinci Diagnostic ; Dystrophie musculaire ; Maladies rares ; Parentalité ; Prise de décision |
Résumé : |
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 was given; and (d) Lack of Guidance describes the follow-up that occurred after the diagnosis. Conclusion Despite marked medical progress over the past several decades, substantial barriers to arriving at the diagnosis of DMD and the provision of care guidance remain. |
Disponible en ligne : | Non |
Exemplaires (1)
Cote | Support | Localisation | Section | Disponibilité |
---|---|---|---|---|
REV | Périodique papier | Woluwe | Espace revues | Consultation sur place uniquement Exclu du prêt |