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Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences
Department of Neuroscience, Neurology, Uppsala University, University Hospital, Uppsala, Sweden.
Department of Neuroscience, Neurology, Uppsala University, University Hospital, Uppsala, Sweden, Department of Clinical and Experimental Medicine, Neurology, Medical Faculty, University of Linköping, Linköping, Sweden.
University West, Department of Health Sciences, Section for nursing - graduate level.ORCID iD: 0000-0001-8017-0998
2017 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, e0180054Article in journal (Refereed) Published
Abstract [en]

Elucidating patients´ 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
San Francisco, CA: Public Library of Science , 2017. e0180054
Keyword [en]
chronic progressive hereditary ataxia, treatment, patient experience
National Category
Nursing Neurology
Research subject
NURSING AND PUBLIC HEALTH SCIENCE, Nursing science
Identifiers
URN: urn:nbn:se:hv:diva-11256DOI: 10.1371/journal.pone.0180054OAI: oai:DiVA.org:hv-11256DiVA: diva2:1129267
Available from: 2017-08-02 Created: 2017-08-02 Last updated: 2017-08-02

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CiteExportLink to record
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Citation style
  • apa
  • harvard1
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