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Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients experiences
Uppsala University, Sweden.
Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Neurology. Uppsala University, Sweden.
University of West, Sweden.
2017 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 12, no 6, article id e0180054Article in journal (Refereed) Published
Abstract [en]

Elucidating patients A experiences of living with chronic progressive hereditary ataxia and the symptomatic treatment with intrathecal baclofen (ITB) is the objective of the current study. A multicenter qualitative study with four patients included due to the rare combination of hereditary ataxia and ITB therapy was designed to elucidate participants experiences through semi-structured interviews. The transcribed text was analyzed according to content analysis guidelines. Overall we identified living in the present/taking one day at a time as the main theme covering the following categories: 1) Uncertainty about the future as a consequence of living with a hereditary disease; The disease; 2) Impact on life as a whole, 3) Influence on personal life in terms of feeling forced to terminate employment, 4) Limiting daily activities, and 5) ITB therapy, advantages, and disadvantages. Uncertainty about the future was the category that affected participants personal life, employment, and daily activities. The participants experience of receiving ITB therapy was expressed in terms of improved quality of life due to better body position and movement as well as better sleep and pain relief.

Place, publisher, year, edition, pages
PUBLIC LIBRARY SCIENCE , 2017. Vol. 12, no 6, article id e0180054
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Nursing
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URN: urn:nbn:se:liu:diva-139823DOI: 10.1371/journal.pone.0180054ISI: 000404541500051PubMedID: 28654671OAI: oai:DiVA.org:liu-139823DiVA, id: diva2:1133896
Available from: 2017-08-17 Created: 2017-08-17 Last updated: 2018-05-02

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Landtblom, Anne-Marie
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Citation style
  • apa
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Language
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Output format
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