Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources
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- 作者：Natalia Frishman ; Kristin Caspers Conway…
- 关键词：Becker muscular dystrophy ; Caregivers ; Duchenne muscular dystrophy ; Dystrophinopathy ; Muscular dystrophies ; Quality of life
- 刊名：Health and Quality of Life Outcomes
- 出版年：2017
- 出版时间：January 2017
- 年：2017
- 卷：15
- 期：1
- 全文大小：869KB
- 刊物主题：Quality of Life Research; Quality of Life Research;
- 出版者：BioMed Central
- ISSN：1477-7525
- 卷排序：15
文摘
BackgroundDuchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are recessive X-linked disorders characterized by progressive muscle weakness and ultimately cardiac and respiratory failure. Immediate family members are often primary caregivers of individuals with a dystrophinopathy.