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Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years.
Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
2004 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 26, no 23, p. 1388-1398Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2004. Vol. 26, no 23, p. 1388-1398
Keywords [en]
Accidental Falls, Adult, Aged, Chronic Disease, Disabled Persons/*rehabilitation, Disease Progression, Health Status, Humans, Middle Aged, Muscular Dystrophies/psychology/*rehabilitation, Quality of Life
National Category
Nursing Nursing
Identifiers
URN: urn:nbn:se:hj:diva-3675PubMedID: 15742985OAI: oai:DiVA.org:hj-3675DiVA, id: diva2:34495
Available from: 2007-10-10 Created: 2007-10-10 Last updated: 2017-12-12Bibliographically approved

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Ahlström, Gerd

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