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...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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Taylor & Francis Group
2016-10-01
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| Series: | International Journal of Qualitative Studies on Health & Well-Being |
| Subjects: | |
| Online Access: | http://www.ijqhw.net/index.php/qhw/article/view/32045/49043 |
| _version_ | 1819140004844142592 |
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| author | Haruo Fujino Yuko Iwata Toshio Saito Tsuyoshi Matsumura Harutoshi Fujimura Osamu Imura |
| author_facet | Haruo Fujino Yuko Iwata Toshio Saito Tsuyoshi Matsumura Harutoshi Fujimura Osamu Imura |
| author_sort | Haruo Fujino |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-12-22T11:31:40Z |
| format | Article |
| id | doaj.art-b247d458b2634d06afbd4825f4fa60ce |
| institution | Directory Open Access Journal |
| issn | 1748-2631 |
| language | English |
| last_indexed | 2024-12-22T11:31:40Z |
| publishDate | 2016-10-01 |
| publisher | Taylor & Francis Group |
| record_format | Article |
| series | International Journal of Qualitative Studies on Health & Well-Being |
| spelling | doaj.art-b247d458b2634d06afbd4825f4fa60ce2022-12-21T18:27:36ZengTaylor & Francis GroupInternational Journal of Qualitative Studies on Health & Well-Being1748-26312016-10-011101810.3402/qhw.v11.3204532045The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditionsHaruo Fujino0Yuko Iwata1Toshio Saito2Tsuyoshi Matsumura3Harutoshi Fujimura4Osamu Imura5 Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan Graduate School of Human Sciences, Osaka University, Suita, Osaka, Japan Division of Child Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Department of Neurology, National Hospital Organization Toneyama National Hospital, Toyonaka, Osaka, Japan Graduate School of Human Sciences, Osaka University, Suita, Osaka, JapanPatients 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.http://www.ijqhw.net/index.php/qhw/article/view/32045/49043Duchenne muscular dystrophyhealth communicationgenetic diseasenarrationqualitative study |
| spellingShingle | Haruo Fujino Yuko Iwata Toshio Saito Tsuyoshi Matsumura Harutoshi Fujimura Osamu Imura The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions International Journal of Qualitative Studies on Health & Well-Being Duchenne muscular dystrophy health communication genetic disease narration qualitative study |
| 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 | Duchenne muscular dystrophy health communication genetic disease narration qualitative study |
| url | http://www.ijqhw.net/index.php/qhw/article/view/32045/49043 |
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