The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions. Issue 1 (1st January 2016)

• Record Type: Journal Article
• Authors: Fujino, Haruo; Iwata, Yuko; Saito, Toshio; Matsumura, Tsuyoshi; Fujimura, Harutoshi; Imura, Osamu
• Is Part Of: International journal of qualitative studies on health and well-being. Volume 11:Issue 1(2016)
• Publication Date: 2016-01-01
• Subjects: Duchenne muscular dystrophy -- health communication -- genetic disease -- narration -- qualitative study; Qualitative research -- Periodicals; Health -- Research -- Methodology -- Periodicals; 362.1072
• DOI: 10.3402/qhw.v11.32045
• Languages: English
• ISSNs: 1748-2623

Abstract

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.