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Cerebellar ataxia and intrathecal baclofen therapy: Focus on patients´ experiences
Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden.
Uppsala University, Department of Neuroscience, Neurology, University Hospital, Uppsala, Sweden, Department of Clinical and Experimental Medicine, Neurology, Medical Faculty, University of Linköping, Linköping, Sweden.
Högskolan Väst, Institutionen för hälsovetenskap, Avdelningen för omvårdnad - avancerad nivå.ORCID-id: 0000-0001-8017-0998
2017 (Engelska)Ingår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 2, nr 6, artikel-id e0180054Artikel i tidskrift (Refereegranskat) 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.

Ort, förlag, år, upplaga, sidor
2017. Vol. 2, nr 6, artikel-id e0180054
Nyckelord [en]
chronic progressive hereditary ataxia, treatment, patient experience
Nationell ämneskategori
Omvårdnad Neurologi
Forskningsämne
VÅRD- OCH HÄLSOVETENSKAP, Vårdvetenskap
Identifikatorer
URN: urn:nbn:se:hv:diva-11256DOI: 10.1371/journal.pone.0180054ISI: 000404541500051PubMedID: 28654671Scopus ID: 2-s2.0-85021348301OAI: oai:DiVA.org:hv-11256DiVA, id: diva2:1129267
Tillgänglig från: 2017-08-02 Skapad: 2017-08-02 Senast uppdaterad: 2019-05-21

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