ArticleInternational journal of qualitative studies on health and well-being2016
The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions.
Article in International journal of qualitative studies on health and well-being, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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Who cites it
8 citing papers in PubMed.
- Interests and Experiences of Young Adults with Muscular Dystrophy in Receiving Genetic Information.Journal of child neurology · 2025Article
- Lost in Transition: Challenges in the Journey from Pediatric to Adult Care for a RomanianHealthcare (Basel, Switzerland) · 2025Article
- Perceptions of Healthcare Quality in Duchenne Muscular Dystrophy: A Patient Experience Exploratory Study.Healthcare (Basel, Switzerland) · 2025Article
- "You Take This Day by Day, Come What May": A Qualitative Study of the Psychosocial Impacts of Living with Duchenne Muscular Dystrophy.Advances in therapy · 2024Article
- The Importance of Implementing a Transition Strategy for Patients with Muscular Dystrophy: From Child to Adult-Insights from a Tertiary Centre for Rare Neurological Diseases.Children (Basel, Switzerland) · 2023Article
- The impact of testosterone therapy on quality of life in adolescents with Duchenne muscular dystrophy.Neuromuscular disorders : NMD · 2021Article
- Psychological Case Conference Following the Death of a Patient With Neuromuscular Disease: A Source of Emotional Support for Participating Medical Staff.Journal of patient experience · 2020Article
- Duchenne and Becker muscular dystrophy in adolescents: current perspectives.Adolescent health, medicine and therapeutics · 2018Review
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Authors and funding
6 authors.
Funding
No grant is acknowledged in the PubMed record.
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.
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