Life situation of adults with congenital limb reduction deficiency in Sweden

Abstract

Purpose: 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. Methods: 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. Results: 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. Conclusion: 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.

• Adults
• congenital limb reduction deficiency
• daily occupation
• life situation

Acknowledgements

The authors would like to thank everyone who took part in the study and the staff of The Limb Deficiency Centre at Örebro University Hospital.