Abstract:
: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.
journal_name
Int J Qual Stud Health Well-beingauthors
Fujino H,Iwata Y,Saito T,Matsumura T,Fujimura H,Imura Odoi
10.3402/qhw.v11.32045subject
Has Abstractpub_date
2016-10-05 00:00:00pages
32045eissn
1748-2623issn
1748-2631pii
32045journal_volume
11pub_type
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journal_title:International journal of qualitative studies on health and well-being
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