Lindsay Sally, Cagliostro Elaine, McAdam Laura
Can J Occup Ther. 2019 Oct;86(4):277-288. doi: 10.1177/0008417419832466. Epub 2019 May 16.
BACKGROUND.: Youth with Duchenne muscular dystrophy (DMD) and other neuromuscular disorders are living well into adulthood and often need help engaging in meaningful occupations.
PURPOSE.: Our purpose was to explore enablers and barriers to engaging in meaningful occupations, from the perspectives of youth, parents, and practitioners.
METHOD.: This qualitative study involved 26 participants (11 parents, eight youth ages 19 to 28 [mean = 22.3 years], seven practitioners). Data were obtained from semistructured interviews and analyzed using an interpretive descriptive approach.
FINDINGS.: Youth with DMD and neuromuscular disorders engage in meaningful occupations in a variety of ways. Occupational enablers were supports and accommodations and self-care skills and coping strategies, while occupational barriers involved societal expectations of a normative adulthood, discrimination and inaccessible environments, lack of supports and resources, medical challenges, fatigue, lack of motivation, and social isolation and depression.
IMPLICATIONS.: Practitioners should work to uncover what youth consider important and connect them to appropriate resources so they can engage in meaningful occupations.
患有杜氏肌营养不良症（DMD）和其他神经肌肉疾病的青少年正步入成年期，他们在从事有意义的活动时常常需要帮助。
我们的目的是从青少年、家长和从业者的角度，探索参与有意义活动的促进因素和障碍。
这项定性研究涉及26名参与者（11名家长、8名年龄在19至28岁之间的青少年[平均年龄=22.3岁]、7名从业者）。数据通过半结构化访谈获得，并采用解释性描述方法进行分析。
患有DMD和神经肌肉疾病的青少年通过多种方式参与有意义的活动。职业促进因素包括支持与便利、自我护理技能和应对策略，而职业障碍则涉及社会对正常成年期的期望、歧视和无障碍环境的缺失、支持与资源的匮乏、医疗挑战、疲劳、缺乏动力以及社会孤立和抑郁。
从业者应努力发现青少年认为重要的事物，并将他们与合适的资源联系起来，以便他们能够参与有意义的活动。
