Sjöberg Lis, Nilsagård Ylva, Fredriksson Carin
Department of Paediatrics, Limb Deficiency and Arm Prosthesis Centre, Örebro University Hospital , Örebro , Sweden .
Disabil Rehabil. 2014;36(18):1562-71. doi: 10.3109/09638288.2013.854839. Epub 2013 Nov 18.
To describe the current life situation of adults with congenital limb reduction deficiencies (CLRD), living in Sweden, regarding their main daily occupation, leisure activities and self-reported general health.
A cross-sectional survey was conducted using a study-specific questionnaire, sent by post. Hundred and seventeen persons with different extent, forms and levels of CLRD (mean age 33 years) responded to the questionnaire.
Work or study was the main occupation for 86% of the participants and 50% had completed a college or university education. About 7% were unemployed and 3% were on sick leave. The participants were highly involved in social and physical activities during leisure time. The majority reported good or very good general health.
This study is the first investigation of the life situation of adults with CLRD described with a perspective from Swedish society. The participants were educated and worked to a great extent, which corresponds well to the Swedish population as a whole. Further research is needed, especially with a focus on the internal perspective of life situation, different aspects of work capacity, occurences of strain injuries and the benefit of assistive devices among adults with CLRD. Implications for Rehabilitation People with CLRD require a health care system with a multi-professional rehabilitation team offering regular contact during their life time. Educational system offering study counselling on all education levels (from primary school to university) is an important type of support for people with any kind of deficiency, in order to find suitable education and profession. Work is of importance for an acceptable life situation. Rehabilitation for people with CLRD should emphasise facilitating their ability to work, through engagement in individual personal capacity and self-efficacy. The majority of people with CLRD are users of prostheses and assistive devices. The benefits of the devices are basic but the rehabilitation should also include aspects of usability and use worthiness for individuals in performing their daily activities.
描述生活在瑞典的患有先天性肢体残缺（CLRD）的成年人目前的生活状况，包括他们的主要日常活动、休闲活动以及自我报告的总体健康状况。
采用特定研究问卷进行横断面调查，问卷通过邮寄发放。117名患有不同程度、形式和部位CLRD（平均年龄33岁）的人回复了问卷。
86%的参与者主要从事工作或学习，50%的人完成了大专或大学教育。约7%的人失业，3%的人请病假。参与者在休闲时间积极参与社交和体育活动。大多数人报告总体健康状况良好或非常好。
本研究是首次从瑞典社会视角描述患有CLRD的成年人生活状况的调查。参与者在很大程度上接受了教育并参加工作，这与瑞典总人口情况相符。需要进一步开展研究，尤其要关注CLRD成年人生活状况的内在视角、工作能力的不同方面、劳损性损伤的发生情况以及辅助器具的益处。对康复的启示患有CLRD的人需要一个由多专业康复团队组成的医疗保健系统，在他们的一生中提供定期联系。为各个教育层次（从小学到大学）提供学习咨询的教育系统，对于任何有缺陷的人来说都是一种重要的支持类型，以便找到合适的教育和职业。工作对于可接受的生活状况很重要。针对CLRD患者的康复应强调通过发挥个人能力和自我效能来促进他们的工作能力。大多数CLRD患者使用假肢和辅助器具。这些器具的益处是基本的，但康复还应包括器具在个人日常活动中的可用性和使用价值等方面。
