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The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions

Patients experience extreme difficulty when facing an intractable genetic disease. Herein, we examine the experiences of patients with Duchenne muscular dystrophy in facing and learning about their disease. A total of seven patients with Duchenne muscular dystrophy (age range: 20–48) participated. W...

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Autores principales: Fujino, Haruo, Iwata, Yuko, Saito, Toshio, Matsumura, Tsuyoshi, Fujimura, Harutoshi, Imura, Osamu
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Co-Action Publishing 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5054085/
https://www.ncbi.nlm.nih.gov/pubmed/27712620
http://dx.doi.org/10.3402/qhw.v11.32045
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author Fujino, Haruo
Iwata, Yuko
Saito, Toshio
Matsumura, Tsuyoshi
Fujimura, Harutoshi
Imura, Osamu
author_facet Fujino, Haruo
Iwata, Yuko
Saito, Toshio
Matsumura, Tsuyoshi
Fujimura, Harutoshi
Imura, Osamu
author_sort Fujino, Haruo
collection PubMed
description Patients experience extreme difficulty when facing an intractable genetic disease. Herein, we examine the experiences of patients with Duchenne muscular dystrophy in facing and learning about their disease. A total of seven patients with Duchenne muscular dystrophy (age range: 20–48) participated. We conducted in-depth interviews with them about how they learned of their disease and how their feelings regarding the disease changed over time. Transcribed data were analysed using thematic analysis. The following themes emerged from this analysis: “experiences before receiving the diagnosis,” “experiences when they learned of their condition and progression of the disease,” “supports,” and “desired explanations.” Anxiety and worry were most pronounced when they had to transition to using wheelchairs or respirators due to disease progression; indeed, such transitions affect the patients psychological adjustment. In such times, support from significant others in their lives helped patients adjust.
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spelling pubmed-50540852016-11-17 The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions Fujino, Haruo Iwata, Yuko Saito, Toshio Matsumura, Tsuyoshi Fujimura, Harutoshi Imura, Osamu Int J Qual Stud Health Well-being Empirical Study Patients experience extreme difficulty when facing an intractable genetic disease. Herein, we examine the experiences of patients with Duchenne muscular dystrophy in facing and learning about their disease. A total of seven patients with Duchenne muscular dystrophy (age range: 20–48) participated. We conducted in-depth interviews with them about how they learned of their disease and how their feelings regarding the disease changed over time. Transcribed data were analysed using thematic analysis. The following themes emerged from this analysis: “experiences before receiving the diagnosis,” “experiences when they learned of their condition and progression of the disease,” “supports,” and “desired explanations.” Anxiety and worry were most pronounced when they had to transition to using wheelchairs or respirators due to disease progression; indeed, such transitions affect the patients psychological adjustment. In such times, support from significant others in their lives helped patients adjust. Co-Action Publishing 2016-10-05 /pmc/articles/PMC5054085/ /pubmed/27712620 http://dx.doi.org/10.3402/qhw.v11.32045 Text en © 2016 H. Fujino et al. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 International License, allowing third parties to copy and redistribute the material in any medium or format and to remix, transform, and build upon the material for any purpose, even commercially, provided the original work is properly cited and states its license.
spellingShingle Empirical Study
Fujino, Haruo
Iwata, Yuko
Saito, Toshio
Matsumura, Tsuyoshi
Fujimura, Harutoshi
Imura, Osamu
The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title_full The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title_fullStr The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title_full_unstemmed The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title_short The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions
title_sort experiences of patients with duchenne muscular dystrophy in facing and learning about their clinical conditions
topic Empirical Study
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5054085/
https://www.ncbi.nlm.nih.gov/pubmed/27712620
http://dx.doi.org/10.3402/qhw.v11.32045
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