The experiences of patients with Duchenne muscular dystrophy in facing and learning about their clinical conditions.
Int J Qual Stud Health Well-being
; 11: 32045, 2016.
Article
em En
| MEDLINE
| ID: mdl-27712620
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.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Apoio Social
/
Adaptação Psicológica
/
Distrofia Muscular de Duchenne
/
Emoções
/
Aprendizagem
Tipo de estudo:
Qualitative_research
Limite:
Adult
/
Humans
/
Male
Idioma:
En
Revista:
Int J Qual Stud Health Well-being
Ano de publicação:
2016
Tipo de documento:
Article
País de afiliação:
Japão