Jeppesen Joergen, Madsen Anny, Marquardt John, Rahbek Jes
RehabiliteringsCenter for Muskelsvind, Aarhus, Denmark.
Dev Neurorehabil. 2010 Feb;13(1):10-8. doi: 10.3109/17518420903154093.
To study conditions of living, participation and diagnostic perceptions in a national population of adult persons with spinal muscular atrophy type 2 (SMA 2).
A mixed method design combining cross-sectional survey data with personal narratives was chosen. Twenty-nine of 37 patients with SMA 2 aged >or=18 years participated in a semi-structured questionnaire survey and three were selected for in-depth journalistic interviews. Socioeconomic data, activities and personal significance of problems were calculated. Journalistic stories were analysed for constructs of personal diagnostic qualities.
Everyone was actively directing their life despite being heavily dependent. Deterioration of physical abilities was a major concern for women. Seventy-six per cent were single, but stated their quality of life as fine. Narratives of living with SMA 2 were associated with positive characteristics, as opposed to the medical diagnostic wording.
Female coping needs more research. Narrative method complements medical knowledge.
研究2型脊髓性肌萎缩症（SMA 2）成年患者全国人群的生活状况、参与情况及诊断认知。
采用横断面调查数据与个人叙述相结合的混合方法设计。37例年龄≥18岁的SMA 2患者中有29例参与了半结构化问卷调查，3例被选入进行深度新闻访谈。计算社会经济数据、活动及问题的个人意义。分析新闻报道故事中的个人诊断特质结构。
尽管严重依赖他人，每个人都在积极地掌控自己的生活。身体能力的下降是女性主要关心的问题。76%的人单身，但表示他们的生活质量良好。与医学诊断措辞相反，SMA 2患者的生活叙述与积极特征相关。
女性应对方式需要更多研究。叙述方法可补充医学知识。
