Katrin Boström1, Gerd Ahlström. 1. The Swedish Institute for Disability Research Orebro and Linköping Universities, Sweden. katrin.bostrom@orebroll.se
Abstract
PURPOSE: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. METHODS: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. RESULTS: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. CONCLUSIONS: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.
PURPOSE: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. METHODS: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. RESULTS: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. CONCLUSIONS: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.
Authors: Edith H C Cup; Astrid Kinébanian; Ton Satink; Allan J Pieterse; Henk T Hendricks; Rob A B Oostendorp; Gert Jan van der Wilt; Baziel G M van Engelen Journal: BMC Neurol Date: 2011-07-13 Impact factor: 2.474