Lexell E M, Langdell I, Lexell J
Department of Health Sciences, Lund University, Lund, Sweden.
Department of Neurology and Rehabilitation Medicine, Skåne University Hospital, Lund-Malmö, Sweden.
Work. 2017;56(4):519-530. doi: 10.3233/WOR-172527.
Neuromuscular diseases (NMD) can affect the ability to be employed and to work, but there is limited knowledge of individuals' own perspectives of factors that are important for their vocational situation.
To explore the vocational situation among people with NMD that are employed, and to describe their experiences of how their disability, personal and environmental factors influence their ability to continue to work.
Nine participants with different NMD were included. A mixed-methods design was used, and data were collected by means of semi-structured and open-ended interviews, and ratings of aspects supporting or interfering with their work performance and the ability to continue to work. Data were analyzed with directed content analysis based on the International Classification of Functioning, Disability and Health, and with descriptive statistics.
The participants' personal characteristics, support from others at work and at home, and a flexible work organization were perceived as important factors facilitating work continuation, whereas physically demanding work assignments and factors in the physical environment were perceived as barriers.
Knowledge of how personal characteristics as well as support from the work organization, managers and family members can facilitate the ability to work is important for employers, staff within different parts of the health care system, and the social security system. Future research should focus on interventions that are best suited to enhance the vocational situation for individuals with NMD.
神经肌肉疾病（NMD）会影响就业和工作能力，但对于个人自身而言，对其职业状况至关重要的因素的了解却很有限。
探讨已就业的神经肌肉疾病患者的职业状况，并描述他们关于自身残疾、个人及环境因素如何影响其继续工作能力的经历。
纳入9名患有不同神经肌肉疾病的参与者。采用混合方法设计，通过半结构化和开放式访谈收集数据，并对支持或干扰其工作表现及继续工作能力的方面进行评分。基于《国际功能、残疾和健康分类》，采用定向内容分析法和描述性统计对数据进行分析。
参与者的个人特征、工作场所和家庭中他人的支持以及灵活的工作组织被视为有助于继续工作的重要因素，而体力要求高的工作任务和物理环境中的因素则被视为障碍。
了解个人特征以及工作组织、管理人员和家庭成员的支持如何促进工作能力，对雇主、医疗保健系统不同部门的工作人员以及社会保障系统而言都很重要。未来的研究应侧重于最适合改善神经肌肉疾病患者职业状况的干预措施。
