Handberg Charlotte, Werlauff Ulla, Højberg Ann-Lisbeth
National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Glob Qual Nurs Res. 2022 Apr 27;9:23333936221094858. doi: 10.1177/23333936221094858. eCollection 2022 Jan-Dec.
This study aimed to investigate perspectives on everyday life challenges of young persons with Duchenne muscular dystrophy in Denmark treated with corticosteroids perceived by young persons and their parents to improve rehabilitation interventions. Nineteen semi-structured interviews were conducted: 10 individual interviews with 10 persons with DMD and six individual interviews with parents (five mothers and one father) and three couple interviews (three mothers and three fathers). The analysis was guided by interpretive description methodology and Antonovsky's Sense of Coherence theory. The results indicated that persons with Duchenne muscular dystrophy existed in a flux between experiencing greater Sense of Coherence revolving around normality and less Sense of Coherence exposing their vulnerability which unfolded in four opposing themes: (1) bodily ability and disability, (2) content and anxious, (3) sociable and lonely, and (4) independent and dependent. Future rehabilitation should aim at supporting resistance resources promoting bodily ability, being content, sociable, and independent.
本研究旨在调查丹麦接受皮质类固醇治疗的杜氏肌营养不良症青少年及其父母对日常生活挑战的看法，以改善康复干预措施。研究进行了19次半结构化访谈：对10名杜氏肌营养不良症患者进行了10次个人访谈，对父母（5名母亲和1名父亲）进行了6次个人访谈，以及3次夫妻访谈（3名母亲和3名父亲）。分析以解释性描述方法和安东诺夫斯基的连贯感理论为指导。结果表明，杜氏肌营养不良症患者在围绕正常状态体验到更强的连贯感和暴露自身脆弱性的较弱连贯感之间波动，这体现在四个相反的主题中：（1）身体能力与残疾，（2）满足与焦虑，（3）社交与孤独，以及（4）独立与依赖。未来的康复应旨在支持增强身体能力、满足感、社交能力和独立性的抵抗资源。
